Surgical Mesh Implants

Catherine McKinnell Excerpts

Wednesday 18th October 2017 Westminster Hall

[Emma Hardy]

I will go on to talk about some of the problems with people recognising the symptoms later, so I thank my hon. Friend for that.

Since calling for the debate, my inbox has filled up with emails from men and women across the country telling me their horrific stories of having mesh implanted. I will read one of them, which I received just this week:

“Please help me I feel desperate. Who can I turn to to get relief from the terrible irritation and pain I am experiencing. My husband is very worried about my health mentally and bodily, because I keep telling him the quality of my life is dreadful.”

To hear the stories of the women who have suffered complications following their surgery is extremely distressing. Women tell us that they were informed that the surgery would be a quick fix for their bladder problems, that they would be able to continue to have active lifestyles and that their incontinence would be corrected after the 20-minute operation. Women in their 30s, 40s and 50s tell us that they struggle to walk, have lost their sex lives and suffer from horrendous pain day in, day out. Some even suffer from post-traumatic stress disorder following the horrific impact that the mesh has had on their quality of life.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I congratulate my hon. Friend on securing this hugely important and timely debate. One of my constituents contacted me, and in her words:

“I’ve suffered pain, I’ve soiled myself, suffered depression and sepsis. My employment contract as a store manager will be terminated in the next few weeks due to ill health.

My life has changed dramatically but others shouldn’t have to suffer the same fate. It really is unacceptable that we are in 2017 and this is allowed to happen.”

I have no doubt that my hon. Friend will agree.

[Emma Hardy]

I absolutely agree with that. Sadly, that is also reflected in many of the emails I have read this week. I have no doubt that many women also suffer in silence, either too worried or too embarrassed to see their MPs, or completely unaware that their symptoms are replicated in other women who have had the mesh fitted.

Safeguarding Adults with Learning Disabilities

Catherine McKinnell Excerpts

Tuesday 17th October 2017 Westminster Hall

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I beg to move,

That this House has considered supporting and safeguarding adults with learning disabilities.

It is a pleasure to serve under your chairmanship, Mr Wilson, as we consider this hugely important issue. How we better support and safeguard adults with learning disabilities is a subject on which I have been seeking to secure a debate for some time, following the most appalling case involving a young man with learning disabilities from my constituency and his violent death back in June 2015.

The circumstances leading up to Lee Irving’s killing have been the subject of a safeguarding adults review which was published in June 2017, following the trial and sentencing of those responsible which finally concluded in December 2016. I will return to Lee’s case and the outcome of the review in more depth, but first I will briefly provide some context to the debate.

About 1.4 million to 1.5 million people with a learning disability are estimated to live in the UK, of whom some 350,000 have a severe learning disability. The charity Mencap, which describes itself as the leading voice of learning disability, replies to the question, “What is a learning disability?” by explaining:

“The answer is that it’s different for every person who has one. But there are some things that are true for everyone with a learning disability, and some common (and not so common) conditions that will mean you have a learning disability.”

Mencap goes on to state:

“A learning disability is a reduced intellectual ability and difficulty with everyday activities—for example household tasks, socialising or managing money—which affects someone for their whole life.

People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.

The level of support someone needs depends on the individual.”

Importantly, Mencap concludes:

“It’s important to remember that with the right support, most people with a learning disability in the UK can lead independent lives.”

I saw that for myself in Dinnington in my constituency when I visited the home of the then 18-year-old Joe to hear about how he was being supported by the national charity United Response during the transition from childhood to adulthood. That involved providing Joe with tailored assistance in a supported housing setting to help master tasks such as managing money, basic cooking skills, cleaning the house, keeping up with the laundry, managing his coursework on his construction course at the local mainstream college, and being able to use public transport safely.

One of the concerns that Joe raised with me during that visit was his disappointment that he had been prevented from securing an apprenticeship because he was unable to achieve the required grade C in maths and English at GCSE. I am pleased, as one of the co-chairs of the all-party parliamentary group on apprenticeships, that that requirement has recently been lifted for people with learning disabilities, following a review conducted by the hon. Member for Blackpool North and Cleveleys (Paul Maynard).

I am regularly lobbied by constituents with learning disabilities who, with the support and encouragement of the Newcastle-based charity Better Days, are able to send me easy-read letters about issues of concern, such as the lessons to be learned from the independent review of deaths of people with a learning disability conducted following the tragic death of Connor Sparrowhawk, or the Government’s decision no longer to provide funding to the National Forum of People with Learning Disabilities, which meant it closed in March 2017, having been operational since 2001.

There is a variety of good support out there, but we all know that many people with learning disabilities, and their families and carers, will face a series of enormous challenges, barriers and indeed discrimination throughout their lives, all of which inevitably puts a great deal of strain on family relationships. What do those barriers involve for people with learning disabilities?

Mencap highlights that children with special educational needs are twice as likely as other children to be bullied regularly; 40% of disabled children live in poverty; and 75% of GPs have received no training to help them treat people with a learning disability. The House of Commons Library has noted the evidence that people with a learning disability experience inequalities in healthcare and the fact that, on average, men with a learning disability die 13 years sooner and women with a learning disability 20 years sooner than those without learning disabilities.

Learning Disability Today has reported on a survey that found that almost two thirds of parents of children with learning disabilities said that they missed social engagements in the past year due to the fear of how other people would react to them; one in four young people with a learning disability had been bullied by members of the public at nightclubs or concerts; and only 30% of people would feel comfortable sitting next to someone with a mild learning disability at a show or a concert.

[John Howell (Henley) (Con)]

I hear what the hon. Lady is saying about GPs. Does she think that it would be useful if training were made available to MPs and their staff to deal with such situations?

[Catherine McKinnell]

That is an interesting suggestion. As a constituency MP, I work closely with the organisations I have mentioned so that I may correspond with and represent people with learning disabilities. There are local solutions and, potentially, national ways to support MPs. That is a good suggestion to ensure that those voices are heard in Parliament, and the intention of this debate is very much to give voice to some of the concerns. I am sure that other hon. Members are present for the very same reason.

The issues that I have outlined are just some of the frankly depressing ones faced by people with learning disabilities. Such issues were commented on by Mencap in its response to the Equality and Human Rights Commission report, “Being disabled in Britain: a journey less equal”, which was published earlier this year. In responding to the EHRC report back in April, Mencap commented:

“Rather than move forwards in the past 20 years this report shows how inadequate action and a constant stream of cuts have condemned disabled people to a life of poverty and inequality.

With the employment rate for people with a learning disability currently standing at less than 6% and with cuts to Employment Support Allowance coming into effect this week, it’s not hard to see why so many disabled people are struggling to find money for things as basic as food. People with a learning disability also face inadequate housing, poor access to health care and a society that misunderstands them.”

One challenge facing people with learning disabilities and their families is of course being able to access the right social care support at a time when adult social care budgets are at breaking point after years of punitive cuts to local authority funding since 2010, combined with rising cost pressures. The Local Government Association outlines that some 127,725 adults in England under the age of 65 were receiving long-term social care from their local council for a learning disability in 2015-16, meaning that about one third of councils’ annual social care spending, or approximately £5 billion, is used to support adults with learning disabilities.

The LGA also highlights, however, that the number of adults with a learning disability needing social care is set to rise by 3% a year, piling further pressure on local authority finances. Overall, councils face a £2.3 billion shortage in funding by 2020. I therefore strongly urge the Chancellor to address this issue next month as part of his autumn Budget, as well as the ongoing and serious concerns about the potential historic and future costs associated with sleep-ins, following the change in Government guidance on them, which have significant implications for the future provision of support to adults with learning disabilities.

As I said, there is a particular reason that I secured this debate, which I have been trying to do so for several months. Undoubtedly, all Members of Parliament frequently have to handle very distressing issues, and I have dealt with a lot.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

My hon. Friend is making a valiant attempt. This is a very difficult subject and she is talking about a very distressing and tragic case. To go back to the point about greater public awareness, I have been a Member for 12 years and have certainly never been offered any training about learning disabilities. There is so much to know and she has just given us a useful range of facts. I encourage the Minister to take away what my hon. Friend has just raised as things we should all know.

[Catherine McKinnell]

I thank my hon. Friend for her intervention. It is hard to imagine a more harrowing and disturbing case than that of Lee Irving. My thoughts remain very much with Lee’s family, particularly his mother, Bev, who I know is determined to ensure that something positive comes of her son’s death. I am sorry; I must do this subject the justice of staying composed. I am particularly conscious that Lee’s mother is watching this debate online in Newcastle and that having to relive what happened to her son clearly will always be upsetting. However, it is important that right hon. and hon. Members appreciate the gravity of this case.

Lee was a 24-year-old vulnerable young man with learning disabilities from the West Denton area of my constituency, who was tragically murdered in 2015. In the months leading up to his death, he was living on and off—perhaps existing would be a better word—with a group of people he had befriended and trusted, at their home in the Kenton Bar area of Newcastle. During that time, he was the victim of sustained abuse and exploitation. Lee’s mother, Bev, had reported him missing on three occasions in the weeks before his death, and indeed had alerted the authorities to where he was staying and of her serious concerns about Lee’s safety, given the previous behaviour of those individuals towards her son.

Tragically, Lee’s badly beaten body was found on 6 June 2015, dumped on a grass bank near the A1 in Newcastle, not far from the house he had been occupying with those who were accused of his murder. The cause of Lee’s death was given as respiratory failure due to multiple severe injuries that were inflicted upon him at the house in Kenton Bar between 28 May and 5 June 2015. The injuries included fractures to his nose and jaw, the fracture of 24 ribs and damage to underlying organs, after he had been drugged with a combination of morphine, Valium and buprenorphine—medication used by heroin addicts—which enabled his attackers to conduct sustained physical beatings against him. The four people responsible for Lee’s death also prevented him from receiving the urgent medical attention that he clearly required on several occasions.

Following Lee’s death, a safeguarding adults review was established to hear from the myriad organisations and agencies involved in providing support to Lee and his family during his short life. The review explains:

“The relationship between Lee Irving and his killers was described as one of subservience with Lee beholden to the primary perpetrator”—

James Wheatley—

“for drugs and shelter and where Lee looked up to the primary perpetrator and desperate to fit in tolerated continued violence and abuse. This coercion and drugging were used to control him, prevent him seeking help and over a period of time drawing him back to the house at 33 Studdon Walk.”

Indeed, Mencap has informed me of its concern that Lee’s case is not an isolated one, commenting:

“There are many examples, both reported and unreported, of people with a learning disability who have been abused physically and psychologically by people who they thought were friends. This has given rise to the phrase ‘mate crime’, where individuals take advantage of someone’s vulnerabilities, bullying them physically, psychologically or stealing money or possessions.”

I believe that the safeguarding adults review instigated after Lee’s death raises serious issues, not just for Newcastle, but about how we, as a wider society, support and safeguard adults with learning disabilities. Vida Morris, chair of the Newcastle Safeguarding Adults Board, said after the review had been published:

“Lee’s story will be used locally, regionally and nationally to improve safeguarding and protect vulnerable adults.”

That absolutely must be the case.

It is evident from the review that Lee’s vulnerabilities, which were the result of his learning disability, were clearly identified by a number of local agencies some years before and right up to his death. On six occasions between 2010 and 2014, different organisations considered the risk to Lee to be such as to merit formal multi-agency adult safeguarding written referrals. Examples of Lee’s known vulnerability include an assessment undertaken by Percy Hedley School when he was nearly 18, which described him as

“socially immature and impressionable, a very vulnerable young man who could not ignore people who are distracting him, naive in social situations, easily influenced by others, and unable to identify people’s motivations and intentions.”

The national probation service in Northumbria had numerous interactions with Lee, as he was arrested 30 times between May 2011 and March 2015 for various offences. In December 2012, Lee was sentenced to nine months’ imprisonment for the offences of burglary and theft, and was

“treated as an adult fully responsible for his own actions and able to understand the consequences of the measures imposed.”

Yet the year before, in 2011, the NPS carried out an assessment of Lee and identified that he was

“incredibly vulnerable to the influence and harmful behaviour of others he encounters; that he was financially vulnerable from others. In addition, he was assessed as being vulnerable in custody and in a hostel setting.”

A further NPS assessment stated:

“Lee seems to understand that he is being used and bullied but seems to put up with it rather than be rejected by his peers.”

Another commented:

“Lee is not aware of the risks that he places himself in e.g. spending time with homeless people, sleeping rough, sharing taxis with strangers and giving his clothes and money away. His level of Learning Disability means that he behaves in a way which is focussed on pleasing people, to develop acceptance within groups and possibly to gain kudos through offending for others.”

Despite those assessments, no safeguarding alert was raised by the NPS about Lee Irving during its interaction with him in 2011 and 2012.

An assessment carried out in 2010—five years before Lee’s death—under the Mental Capacity Act 2005 confirmed that Lee’s overall reasoning and thinking abilities were the same as or better than only 0.2% of adults his own age. In other words, Lee’s intellectual abilities placed him in the bottom 1% of adults his own age. There is also a concern that Lee’s intellectual ability may at times have been overestimated, because his relatively better verbal skills may have masked his deficits in other areas.

In March 2015, shortly before Lee’s death, a further Mental Capacity Act assessment was undertaken, at which both he and his family were present, after his family reported that he had returned to live with the people who were exploiting him. That assessment identified that he did not have the capacity to make decisions to keep himself safe when alone in the community. The assessment resulted in an exploration of supported living options, which were still being explored at the time of his death.

The safeguarding adults review notes:

“Throughout his long engagement with services Lee failed to attend nearly half his numerous appointments with various services. While in his early teenage years his family often ensured his attendance, when in his late teens, his family’s influence declined and his chaotic lifestyle led to less frequent attendance at appointments, making it…difficult for…agencies to deliver the care and support that Lee needed.”

I find it hard to understand why that behaviour did not set more alarm bells ringing about Lee’s welfare, given that his vulnerabilities were well documented.

The review further states that

“Lee’s life slid into a chaotic cycle of offending, being reported missing and associating with so called ‘friends’ who exploited him. In October 2014 a decision was taken to award Lee with a direct payment—giving him control of some of his monies in order to directly purchase services or other forms of support… later that control passed to Lee himself.”

Again, given the circumstances in which Lee was living and the fact that his mother was already reporting that he was being financially exploited, I find that hard to understand.

Tragically, given what was to happen later, the police actually attended the address at which Lee was being held between 28 May and 5 June 2015, when we know that Lee was inside the house and already injured. However, no search was conducted, despite Lee having been reported missing by his mother, her belief that he was at the house and the police being aware of the extensive criminal records of those living at the property, including for violent offences.

The safeguarding review notes:

“It is clear that all agencies tried hard to deliver a service to Lee and/or his family but on many occasions this was made difficult due to Lee’s lack of engagement and his determination to keep bad company…these efforts were not adequately co-ordinated or led by each of the main agencies…Throughout the long engagement with agencies the lead changed according to the circumstances…Therefore, no agency was able to take overall responsibility for co-ordination and leadership, however, as noted in the report agencies were in contact on a regular basis with each other.”

The review adds:

“Lee Irving was a difficult person to help. His reluctance to engage with services and his failure to attend appointments made it extremely difficult for agencies to support him and his family. Despite this, agencies persisted in their attempts to help and protect him. It is clear that all agencies approached Lee Irving with the best of intentions.”

I continue from the review:

“Many agencies were involved in Lee’s complex case over a lengthy period. They saw him in different ways according to their discipline and…many did not appreciate the risk attached to his lifestyle and disability. There were, however, clear indications of Lee Irving’s vulnerabilities and recorded Safeguarding Alerts pointing to the threats present at the house at 33 Studdon Walk where he lived latterly and where he was killed…his specific vulnerabilities were accurately identified. The cumulative effects of these risk factors were not, however, weighed or considered in a multi-agency forum when planning for his care.”

The review also made clear:

“Perhaps as a consequence of a lack of co-ordination a number of options for intervening in the case of Lee Irving were not considered. No legal advice was sought from agencies solicitors and the possibility of Court of Protection proceedings or other legal options”—

deprivation of liberty—

“were not pursued.”

Whether any of those options would have succeeded in intervening in Lee Irving’s decline and eventual death will never be known.

Extremely worryingly, the safeguarding adults review suggested that:

“The behaviour of Lee was perhaps interpreted by some professionals as consistent with his choice of an antisocial and criminal lifestyle. Whilst not held by all agencies this interpretation meant that his criminal conduct was not always considered as a symptom of his disability, increasing vulnerability or the exploitation that he was subject to.”

Of particular concern to Lee’s mother, Bev, following her son’s death, are the challenges that parents of adult children with learning difficulties face in continuing to be involved in decisions about their care. The safeguarding adults review outlined that Lee’s family

“described the difference in the way professionals were able to respond to Lee as an adult as being frustrating and difficult to understand…Lee was…classed as an adult while his mental capacity remained that of a child”.

It also recorded that, on Lee reaching adulthood, Lee’s family

“felt excluded from some of the key decisions about his care. They felt that some professionals excluded or disregarded them and that decisions about options for the ongoing care of their family member were made without their input. In particular, they express severe concern that despite their specific warnings about Lee’s living conditions at the home at Studdon Walk, the measures taken to protect him were unsuccessful.

In conclusion, the family felt that while more should have been done to protect Lee towards the end of his life such was Lee’s determination to place himself at risk that only secure accommodation would have protected him. Whilst they had resisted this option at the time, with the benefit of hindsight they recognise that other measures were unlikely to have succeeded.”

Indeed, following the publication of the review in June, Lee’s mother, Bev, commented:

“Nobody listened to each other, but my main concern was nobody listened to me. If I had been listened to, then my son would still be alive now. I had my son reported missing three times in the previous few weeks up until his death and they wouldn’t bring him back. They wouldn’t inform me where he was, which I find very, very hurtful. It’s disgusting.”

In response to that, the director of people at Newcastle City Council stated:

“I know that Lee’s family felt excluded from some of the decisions that were taken about his care and that their warnings about his living conditions were not acted upon effectively. For that we are truly sorry.”

The safeguarding adults review highlighted that Lee’s family “had two main recommendations” following their son’s death. First, that

“the move from Children’s to Adults’ services be better managed to ensure a smoother transition without loss of support and that services consider the capacity rather than the age of the individual.”

Secondly, that

“families remain part of the decision-making process in the case of vulnerable adults and be fully involved/consulted on ‘best interest’ and other decisions relating to family members.”

Bev Irving has explained that she hopes those changes will be made so that, in her words,

“Lee’s name can live on in the name of Lee’s law”.

I look forward to hearing the Minister’s response to the recommendations and whether the Government can act on them to help ensure that the lessons from Lee’s case are genuinely learned across the country.

There is one further aspect to the case that I find deeply concerning. James Wheatley was found guilty of murdering Lee in December 2016. His mother, Julie Mills, his then girlfriend, Nicole Lawrence, and Barry Imray, who also had learning disabilities, were found guilty of, or admitted to, conspiring to pervert the course of justice and causing or allowing the death of a vulnerable person. Wheatley was sentenced to a minimum 23-year term and the original sentences of Mills and Lawrence were increased after the Crown Prosecution Service successfully appealed them as being unduly lenient, with the support of the Solicitor General. I know that the family are grateful for that.

Both the CPS and Northumbria police believed that the multiple and horrific offences perpetrated against Lee were motivated by his disability. Indeed, the safeguarding adults review commenced with that view. However, the trial judge, in his sentencing remarks, told Wheatley that

“In order to reach the conclusion”

that the offence was aggravated by disability

“the statute requires me to be sure that, at the time of committing the offence or immediately before or after doing so, you demonstrated hostility towards Lee Irving based on his disability or that your offence was motivated by hostility towards persons who have this or any disability. I am not satisfied on either basis. Although your texts”

to one of the other accused

“show repeated use of the repellent word ‘spastic’, I am not able to infer that such language was used towards Lee Irving at the time or immediately before or after your murderous assault. Furthermore, in my judgment you were motivated in this offence not by hostility towards those with disability but by your vicious and bullying nature which particularly takes advantage of those who are unable or less able to resist.”

That calls into question whether the current legislation—section 146 of the Criminal Justice Act 2003, which provides for an aggravated sentence—is fit for purpose, as it is unclear how anyone could prove a disability hate crime under the threshold unless the perpetrator made such an admission. I raised this issue with the Solicitor General, to which I received a response that the judge’s

“finding that the offences were not motivated by hostility is a finding of fact. Such findings are incredibly difficult…to challenge on appeal to the Court of Appeal, since I need to satisfy the court not only that the judge was plainly wrong, but also that it is in the interests of justice to overturn his finding of fact.

My decision was that I would not succeed in overturning the finding of fact in this particular case. I only reached this conclusion after receiving advice from the leading counsel at trial, the CPS’ hate crime stakeholder manager, and a senior barrister who is a specialist in these kind of cases. I also looked at general advice from First Senior Treasury Counsel, the Government’s most senior barrister in criminal matters, on how to apply the hate crime provisions.”

I am aware that the CPS has recently published revised guidance setting out the factors to be taken into consideration when reviewing cases and prosecuting offences classified as disability hate crime. However, in Lee Irving’s case the issue was not with the police or CPS not recording or prosecuting the barbaric offences committed against him as disability hate crimes but that the judge could not be sure that, at the time of committing the offence, or immediately before or afterwards, the perpetrator demonstrated hostility towards Lee based on his disability, or that the offence was motivated by hostility towards people with disabilities—the threshold set in the existing legislation. That is concerning at a time when we know that disability hate crime is a significant issue.

Mencap highlights that some 73% of people with a learning disability and autism responding to a 2016 Dimensions survey said that they had experienced hate crime, while recorded hate crime based on disability has increased by 44% since last year. The true extent of the problem is being masked by people with a disability or learning disability who are too scared or do not feel able to report incidents. I strongly urge the Minister to ensure that the Government look at this issue again, in the light of Lee’s case, although I am conscious that it is not within her departmental remit.

I fully recognise that I have raised a number of wide-ranging issues this afternoon, many of which do not fall directly within the Minister’s portfolio. However, I am pleased to have been able to put on record the different, and very important, concerns that Lee’s mother has raised with me following her son’s death. Those ultimately responsible for Lee Irving’s horrific abuse and murder are now locked up in prison where they belong. Indeed, thanks to the intervention of the Solicitor General, some sentences were increased for being unduly lenient. However, the current legislation needs to be reviewed, because if Lee’s case could not be regarded as a disability hate crime, it is hard to know how the current threshold could be met.

I have also outlined how important it is for adults with learning disabilities to receive the right care and support to enable them to live independent lives where that is appropriate. However, I have real concerns about the issues raised by Lee’s case, and the fact that those charged with safeguarding Lee—an extremely vulnerable adult—did not get the balance right between independence and protection. Nor does it appear that the many agencies that interacted with Lee shared information with each other about his vulnerabilities, or properly listened to or acted on the concerns repeatedly raised by his family, which might have resulted in Lee still being here today.

It is critical that lessons are learned from Lee Irving’s case as quickly as possible, right across the country. I look forward to hearing from the Minister how she intends to ensure that that will be the case.

--- Later in debate ---

[Jackie Doyle-Price]

I totally agree with the hon. Lady. As she says, we have seen that in other cases of abuse. We can look at Rotherham and how the agencies behaved there. It is almost as if there is a view that, “He’s a bad ’un; he doesn’t deserve protection.” That is absolutely not the case. We need to be thinking about the person in a very person-centred way. It was very clear that Lee had a learning disability and did not have the capacity to act as an adult, yet he was treated as one. That is one of the real lessons of this case.

With specific regard to the requests of the family, the whole area of transition is certainly of concern to me. We see this issue in relation not just to learning disabilities, but to mental health. In both cases, families are often completely unable to influence support or care for their loved one; they are utterly powerless because they are in the control of institutions. We need to be learning the very clear lessons there.

We need to raise awareness of hate crime against people with disabilities. Too often, we look at hate crime through the prisms of race and gender. To be honest, we look at hate crime through those prisms because it is the victim of a hate crime who will raise it as such and, frankly, people with disabilities are in less of a position to do so. That said, things are getting better. As I said, it is early days for the offence and prosecution of hate crime, but I am told that in the past year the police have recorded an additional 5,558 disability hate crimes; the number is up by 53%. That suggests that people are more inclined to report it and that the police are more inclined to identify hate crime due to disability, but we continue to monitor the situation and see what else needs to be done to protect the vulnerable.

[Catherine McKinnell]

I appreciate the response that the Minister has given, but the increase in reporting of hate crime is very concerning. There are potentially two issues here. One is that people are more motivated or able to report hate crime, but it may be that there is a significant increase in hate crime as well. It is incumbent on the Government to find a way of monitoring that, so that we can understand whether this is a growing problem or whether there is just more success in terms of the reporting of the crime. We should not confuse the two.

[Jackie Doyle-Price]

That is a fair point. Data is everything, and as time progresses, we will build up more meaningful data, but certainly if crimes are being reported, they are more likely to be prosecuted. Even if the behaviour has been hidden, or if it is on the rise, at least prosecution can happen, but we need to tackle the behaviour first and foremost, to be frank. Prevention is always better than cure.

Under the hate crime action plan launched in July 2016, we committed to providing funding to community-led projects aimed at tackling hate crime. In the first year of the scheme, we funded nine projects across England and Wales covering all types of hate crime. We funded a project in Carlisle involving Mencap. It was to develop an education resource to raise awareness of disability hate crime and how to report it. The great thing about that was that it was created by people with learning disabilities for people with learning disabilities, so it was enabling and empowering the victims. I am advised that three of the projects for the second year of the programme will focus on tackling disability hate crime, but clearly there is more to do.

On 21 August 2017, the Crown Prosecution Service published revised public statements and legal guidance for all strands of hate crime, as well as a support guide for disabled victims and witnesses. One of the most telling things about the speech by the hon. Member for Newcastle upon Tyne North was that it was in the interaction with the criminal justice system that perhaps the most decisive intervention to support Lee could have occurred. Again, we can do more. The Solicitor General is well aware of this matter and, I am sure, is already having discussions with the legal agencies about how we can spread good practice and perhaps look at guidance.

Safeguarding was obviously the real failing in this case. Clearly, we need a system that protects those at risk and acts on issues effectively; that did not happen in this case. As we have heard, once someone becomes an adult, it is very important that it has regard to their feelings and wishes, but the whole issue of mental capacity needs to be determined. In the Care Act 2014, there is a clear legal framework for safeguarding, which gives clear instruction on the responsibilities of local authorities and the rights of adults, but it is also important to involve their families and loved ones as and when necessary. Again, that is a very troubling aspect of this case.

We need to do better. We need to make clear what is expected of the various agencies under the Care Act. We are pursuing Making Safeguarding Personal, which is a sector-led improvement programme that aims to reinforce the placing of the individual at the centre of safeguarding. We are also working with the Association of Directors of Adult Social Services to improve that.

To come back to the issue of the criminal justice system, that was a missed opportunity to give Lee support. During the past two years, we have been working very hard to expand liaison and diversion services. It has been a good news story: more than 71,000 vulnerable adults have been taken out of the criminal justice system and instead put on an integrated health and justice pathway, helping them into health services and away from custody where appropriate. I can assure the hon. Lady that that is still a key part of how we will approach this issue. In fact, I met the team doing that work just last week.

To address the specific recommendations made by the family, the transition from children’s to adults’ services is clearly key. That is where things go wrong; we need to ensure that it is joined up. I always say that if we have a weak link in a chain, we can usually get over that, but if we have a succession of them, that is when things go terribly wrong. As the hon. Lady outlined, there were probably half a dozen in this case.

We are determined that young people with learning disabilities will be properly prepared for adulthood. We are looking at four specific areas: employment, good health, independent living and community inclusion. From the way the hon. Lady articulated Lee’s circumstances, I do not think he could have been judged to be meeting all four of those criteria by any stretch of the imagination, so we must ensure that the support network is in place to help to steer individuals through that, for as long as it takes. It can take a number of years, but the end goal is a good one if we are prepared to make that investment. If people are not ready, they must have support to prevent them from being exploited by those who would exploit people who are vulnerable.

Many people think that the Mental Capacity Act 2005 is very complex legislation, and clearly in this case not everyone knew their obligations under it. There was not a clear understanding of how far the family should have been involved when Lee’s mental capacity was clearly not that of an adult. We want to do a lot more work on educating people in this space. In 2015 we established, with the Ministry of Justice, the National Mental Capacity Forum, specifically to develop those messages and good practice across the sector.

We also have to look at deprivation of liberty safeguards. The Law Commission has recently published its report on mental capacity and deprivation of liberty, and I welcome the observations of the hon. Member for Newcastle upon Tyne North in the light of this case. Like all Law Commission reports, it is a very well-thought-out piece of work. It has had lots of investigation and engagement with stakeholders. We need to make sure that the law is proportionate in respecting people’s liberties, but can also be used to protect the vulnerable. That is clearly the test that we will apply.

We have heard that Lee struggled to navigate the system and that agencies did not work well to support him. Another important tool that will perhaps avoid cases like Lee’s in future is having a named social worker who owns the individual and their needs, and makes sure that those have been satisfied. I think that would make a big difference. We have the named social worker pilot scheme so that more people can have that personalised care and support. They can hold every agency responsible under care plans and be really person-centred, recognising that this is an individual with his own personality, needs and circumstances. That is a very important piece of work. It is our response to the 2015 consultation, “No voice unheard, no right ignored”, which sought views on strengthening the rights of people with learning disabilities, autism and mental health conditions, to enable them to live more independently.

The hon. Lady raised the case of Southern Health and Connor Sparrowhawk. I think we agree that sunlight is the best disinfectant, so all NHS trusts are now required to publish estimates of how many deaths they could have avoided had they been better. That includes the deaths of people with a learning disability. From June next year, trusts must also publish evidence of learning improvements that happen as a result of those data. We expect that the leaders of trusts should show some real accountability and leadership in how they deal with their duties under that requirement.

I want to give the hon. Lady plenty of time to speak at the end, because this is clearly a very important subject for her, but I will quickly add that one of the most important things we need to get right in supporting those with learning disabilities is to invest in good quality supported housing. That is central to encouraging independent living and to having the infrastructure in place to protect them from any potential exploitation.

The hon. Lady also raised the issue of costs and challenges. It is to be celebrated that people with learning disabilities are living longer—for a long time they were dying prematurely. That is a massive improvement in justice, but it does bring with it cash challenges, and obviously we are facing cash challenges across the sector. I wish that was easy to fix. It is not, but it is at the top of my in-tray, as I am sure both she and the hon. Member for Worsley and Eccles South (Barbara Keeley) will understand, and we are very keen to address it. On the specific issue of sleep-ins, which I know Mencap is very worried about, we are actively involved in discussions about how we can support the sector to deal with that.

To conclude, what happened to Lee was not the result of a single cause. There were a number of failings, as the hon. Member for Newcastle upon Tyne North articulately set out. I think there are real challenges: how the criminal justice system understands people with a learning disability, how all the agencies can work more effectively together and how we can provide support for people with a learning disability, so that we not only support, but protect them. We are taking action at a national level to address those. The permanent secretary at the Department of Health is about to convene a cross-departmental roundtable to look at how we can deal with this across Government.

I can give the hon. Lady my assurance that people with learning disabilities are a key priority of mine, and I look forward to making sure that we do not have to have a debate like this in future.

[Catherine McKinnell]

I am pleased to have been able to put the details of Lee Irving’s case on the parliamentary record, for his family and in the hope that some good can come out of this horrendous tragedy. Unfortunately, after seven years of representing the people in Newcastle North, I have not yet succeeded in growing a cold heart or cynicism. I wanted to remain composed in order to make the strongest case possible on behalf of Lee Irving and his family, but the sheer inhumanity of what happened to him shocked the local community and everybody here. Only a cold-hearted person would not be moved by what happened. There is not only upset, but anger and frustration on my part, that the system—our system—let them down so badly.

I thank hon. Members for their powerful and constructive contributions to the debate today—the hon. Members for Henley (John Howell) and for North Swindon (Justin Tomlinson), and both the SNP and Labour Front Benchers, but in particular my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley) for her timely intervention. I thank the Minister for a very sincere and encouraging response. That the Minister for disabled people has been present for this debate, and that the Government are listening so intently, will mean a lot to Lee’s family and anybody following these proceedings.

As well as listening, we need to make sure that the lessons that can be learnt from this case are learnt, as Lee’s family have reasonably requested. I understand what the Minister said about the funding situation, but I could not miss this opportunity, ahead of the Budget next week, to make that case for funding for local authorities, to make sure that we protect and safeguard the most vulnerable in our society. That is to make sure that our local authorities have the funding to put in place some of the measures that the Minister has outlined, because it cannot be done on the cheap. I appreciate that there is also a lot we can do on the funding issues, so I will continue, as invited, to work with the Government, the Department of Health, the Ministry of Justice, the Department for Work and Pensions and the Department for Communities and Local Government, to make sure that something good can come out of this horrific tragedy.

Question put and agreed to.

Resolved,

That this House has considered supporting and safeguarding adults with learning disabilities.

Oral Answers to Questions

Catherine McKinnell Excerpts

Tuesday 10th October 2017 Commons Chamber

[Mr Dunne]

When I visited Kettering General Hospital we discussed excessive agency staff costs. One of the measures announced last week by my right hon. Friend the Secretary of State was a drive to invest more in both regional and local bank agencies within the NHS so that we can reduce the reliance on more expensive agency staff.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

7. What steps his Department is taking to improve end-of-life care.

[The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)]

By 2020 we want significantly to improve patient choice in end-of-life care. The Government’s end-of-life care commitment sets out exactly what everyone should expect. In September we published a report on the good progress that we have made over the first year.

[Catherine McKinnell]

The End of Life Care Coalition has said that it remains deeply concerned about the enduring gap in resources for community-based health and social care services. Meanwhile, Together for Short Lives continues to highlight the unacceptable postcode lottery faced by 40,000 children with life-limiting conditions. What is the Minister doing to ensure that all clinical commissioning groups and sustainability and transformation partnerships will meet the Government’s requirements in full for both children and adults by 2020?

Autism Diagnosis

Catherine McKinnell Excerpts

Wednesday 13th September 2017 Westminster Hall

[Bambos Charalambous (Enfield, Southgate) (Lab)]

The right hon. Member for North Norfolk (Norman Lamb) makes a good point about the need for proper assessment of when the final diagnosis is actually made. It may not be at the first appointment; more than one appointment may be needed before the final diagnosis is established. It is absolutely vital that these diagnoses are made as soon as possible.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

My hon. Friend is making a powerful speech in a timely debate. In light of this debate, a constituent contacted me and shared her very distressing experience of the five long years she waited for a diagnosis for her son. He requires support in every aspect of life and has suffered academically and socially while waiting for that diagnosis. Does my hon. Friend agree that waiting times are far too long? The damaging effects are long-lasting and a poor economic outcome for the country.

[Bambos Charalambous]

My hon. Friend makes the excellent point that the delay in diagnosing autism leads to further economic and social concerns that may have an adverse impact on society in general. That point was very well made.

NICE also has a quality standard for adults with autism, which again recommends that people should have a diagnostic assessment within three months of referral. NICE’s rationale for that states:

“It is important that the assessment is conducted as soon as possible so that appropriate health and social care interventions, advice and support can be offered.”

In my constituency of Enfield, Southgate there is currently no local diagnostic pathway. That means that an adult looking for assessment and a possible diagnosis could not have it done at North Middlesex hospital or Chase Farm hospital—or even Barnet General or the Royal Free, which are within the trust. Instead, they would have to be referred to the Maudsley hospital in south London—a distance of more than 23 miles. While I respect the excellent work that the Maudsley hospital does in mental health, I find it staggering that my constituents not only have to wait three years before getting an appointment for diagnosis, but then have to travel 23 miles to access the services. I suspect the distances may be longer for colleagues in other parts of the country.

Some parents and carers cannot bear the long wait and so feel compelled to pay privately to have their child diagnosed, putting them under extra unnecessary financial pressure in an already stressful situation. Once correctly diagnosed, a child will receive the support they need in schooling and wellbeing via a specifically designed local education, health and care plan, which could have life-changing effects.

Health and Social Care Budgets

Catherine McKinnell Excerpts

Tuesday 14th March 2017 Westminster Hall

[Meg Hillier (Hackney South and Shoreditch) (Lab/Co-op)]

I beg to move,

That this House has considered budgets for health and social care.

It is a pleasure, as ever, to serve under your chairmanship, Mr Bailey. I thank the Backbench Business Committee for granting this important debate about the funding of health and social care. I pay tribute to my fellow Committee Chairs—the hon. Member for Totnes (Dr Wollaston), Chair of the Select Committee on Health, and my hon. Friend the Member for Sheffield South East (Mr Betts), Chair of the Select Committee on Communities and Local Government—for their work, including with my Committee, to shine a light on the challenges of funding our health and social care system for the next generations. I also pay tribute to the Select Committee on Public Administration and Constitutional Affairs for its work in this area. The fact that four Select Committees, and three in particular, are focusing their attention on the issue demonstrates its importance to the nation and to the long-term health of our citizens.

The Public Accounts Committee’s view and concern, which is well documented in a dozen reports produced by us in this Parliament alone, is that there is a challenge with the funding settlement for the national health service. I will not repeat all the arguments that I made in the Chamber during the debate on the estimates the other week, but we are also in the grip of a crisis in social care. The NHS accounts are showing the strain again as we approach the year end.

Last year, as I am well documented as saying, the Comptroller and Auditor General put an extraordinary commentary on the Department of Health accounts, which were laid on the last day of Parliament’s sitting. Extraordinary measures were taken to get them into balance—again, I will not mention them all, but it was a difficult adjustment. The permanent secretary at the Department of Health has acknowledged that that was not good enough, and that such one-off measures should not be repeated. We are now hearing concerns that NHS trusts are delaying paying their suppliers in order to ensure that their budgets balance. We know that, once again, capital funds will be raided and converted into resource funding to keep the NHS on track.

My Committee has discovered that funding in every area of the NHS is facing increasing demand, including specialist services, diabetes and discharge from hospital, which we have considered. The increasing age of the population and advances in medicine mean greater demand on our national health service. When the Government tell us that they are putting more money into the NHS, we must treat that with caution: more money without consideration for the number of people using the service and those who will need it in future is not always enough. Not only is the money not meeting current need, but it will not meet the growing demand.

I will speak briefly, as I am aware that 15 or so Members are scheduled to speak in this debate. The Budget came up with some solutions, as the Chancellor sees them, for funding the NHS. Our concern is that, once again, piecemeal funding is being offered rather than long-term solutions. The Chancellor talked about putting £2 billion into social care, £1 billion of it in the next financial year, starting in April. However, the Local Government Association estimates that more than £1 billion every year is needed to fund the gap in social care. The 2% council tax, often vaunted as a great solution, is a challenge in some areas, particularly where the council tax base is low. My own local authority has increased council tax to cover it, which of course means that local taxpayers are helping fund the system.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I congratulate my hon. Friend on securing this important debate. Dementia Care, a charity based in my constituency, has deep concerns about the current and future funding plans for social care. Dementia Care believes, and I agree, that funding should be based on need, not on a local area’s ability to raise council tax, which clearly disadvantages people in areas such as Newcastle. I know that my hon. Friend shares this view, but I wanted to reiterate on the record that charities providing vital services up and down the country share her concerns.

[Meg Hillier]

I know that my hon. Friend the Member for Sheffield South East will discuss the funding of social care in more detail.

Agenda for Change: NHS Pay Restraint

Catherine McKinnell Excerpts

Monday 30th January 2017 Westminster Hall

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I beg to move,

That this House has considered e-petition 168127 relating to pay restraint for Agenda for Change NHS staff.

It is a great pleasure to serve under your chairmanship, Mr Evans. At a time when the number of deeply concerning and time-consuming issues on the international political agenda is increasing, it is important that we and, most importantly, the Government do not lose focus on our domestic priorities and the challenges affecting our constituents’ day-to-day lives. The national health service is at the very top of that list, so I am pleased to introduce this debate. The way we treat our NHS staff is surely one of the most decisive factors in whether we have the functioning health service that we all need.

The petition is titled:

“Demand an end to the pay restraint imposed on agenda for change NHS staff.”

It has been signed by more than 104,000 people across the country, including 4,500 from my region, the north-east. It reads:

“Agenda for change staff including nursing, midwifery, healthcare assistants and associated healthcare professionals have suffered a pay restraint since 2010. Losing approximately 14% in real terms of their pay, staff are struggling nationwide and many have been pushed into poverty.

The impact of the pay restraint is harsh. Many are sadly leaving the professions they love. There is an NHS staff crisis. In London we lack 10,000 nurses. Yet two fifths of nurses living in the capital plan to leave as they are unable to pay their rent. Staff reporting using food banks and hardship funds is increasing. The pay restraint must end.”

The petition’s creator, Danielle Tiplady, a nurse and supporter of the Royal College of Nursing’s “Nursing Counts” campaign, said:

“Nursing staff deserve a pay award that reflects our knowledge, skill and dedication.”

She added that the interest in her petition

“is a huge achievement, but colleagues are struggling to pay bills and even turning away from the profession, and it’s time Parliament debated why.”

[Wes Streeting (Ilford North) (Lab)]

Danielle Tiplady is one of my constituents, and I am proud that she started the petition. The Royal College of Nursing’s most recent employment survey of its members found that 30% had struggled to pay gas and electricity bills, 14% had missed meals because of financial difficulties, and more than half had been compelled to work extra hours to increase their earnings. Given the demands of the type of work that nurses do, does my hon. Friend agree that our nursing profession is in a terrible place and that the Government surely must act?

--- Later in debate ---

[Catherine McKinnell]

I absolutely agree. It is hard to emphasise enough my support for people working across the NHS in increasingly challenging circumstances, without whom our health service would, quite frankly, cease to exist.

[Nick Thomas-Symonds (Torfaen) (Lab)]

The way to show respect for our nurses and other NHS staff is to act now to remove the cap, as has been described, and listen to the independent pay review body.

[Catherine McKinnell]

My hon. Friend makes an important point. It is not enough for us to state our support for our NHS workers; we must show it through real action.

[Norman Lamb (North Norfolk) (LD)]

I agree with the points that the hon. Lady has made. Does she agree that, given the shortage of about 24,000 nurses, the fact that about one in three are due to retire in the next 10 years, and the challenge of Brexit, which might make recruitment more difficult, one potential consequence of pay restraint, along with the sense of injustice for nurses, is that we will face a real recruitment crisis? People will just vote with their feet and not work in the NHS. That presents us with a real challenge.

[Catherine McKinnell]

I very much share the right hon. Gentleman’s concerns. He anticipates some of the points that I would really like to get across.

My view of the importance of those who work in our NHS is shared not only by Opposition Members. The Department of Health stated in its response to the e-petition:

“Agenda for Change staff are vital. They work incredibly hard for patients and deserve to be fairly rewarded. We are committed to ensuring trusts can afford to employ the staff the NHS needs.

NHS staff are our greatest asset. Despite the pressures on the NHS driven by an increasingly aged and frail population, nurses, and all our hard working NHS staff continue to put patients first, keeping them safe whilst providing the high quality care patients and their families expect.”

How have we found ourselves in a situation in which hard-working, dedicated, exhausted nurses, midwives and other healthcare professionals are genuinely struggling to make ends meet?

[Mr John Spellar (Warley) (Lab)]

Are we not in danger of getting into a downward spiral? Staff feel stretched, undervalued and underpaid, and many are looking to move abroad, or possibly even into other professions— I have had emails to that effect. Many are also going to agencies, and we know how much money agencies make. That costs extra, especially at a time when the retail prices index is moving inexorably up as a result of currency effects.

[Catherine McKinnell]

My right hon. Friend puts his point very succinctly and absolutely correctly.

[Mr George Howarth (Knowsley) (Lab)]

I hesitate to interrupt my hon. Friend, because she is making such a good case, but does she agree, as my right hon. Friend the Member for Warley (Mr Spellar) said, that agency working, which is very expensive, is really a false economy? If nurses leave full-time employment in the NHS to work for agencies, they cost the NHS two or perhaps three times more, so there are no savings whatsoever.

[Catherine McKinnell]

My right hon. Friend is absolutely right. It is also a false economy to lose professionals, given all the money that has been invested to make them a well-trained, well-performing workforce.

As hon. Members will be aware, Agenda for Change was introduced in 2004 as a system of pay, terms and conditions, and it applies to more than 1 million directly employed clinical and non-clinical NHS staff, with the exception of doctors, dentists and some very senior managers. It was designed with the intention of delivering fair, transparent pay that is better linked to career progression, skills and competencies. Agenda for Change is based on the principle of equal pay for work of equal value. According to NHS Employers, the system allows NHS organisations to

“design jobs around the needs of patients rather than around grading definitions”

and individual NHS employers are better able to define the skills and knowledge that they want the staff in those jobs to develop.

Importantly, in relation to this debate, Agenda for Change was also designed to enable employers to address more local recruitment and retention difficulties. However, as with hundreds of thousands of people who work in the public sector, all Agenda for Change staff have been affected by the previous and current Governments’ imposition of pay restraint.

[Mr Andrew Smith (Oxford East) (Lab)]

My hon. Friend is making an excellent speech. Is it not perverse that the Conservative party seems to favour the introduction of all sorts of markets in the NHS apart from a labour market? The devolution of responsibility to trusts that it often heralds is completely inconsistent with a centralised, state-imposed pay freeze.

[Catherine McKinnell]

My right hon. Friend makes an important point. There was a two-year pay freeze from 2011-12 and a 1% increase in 2013-14 and 2014-15, followed by confirmation in the Budget of summer 2015 that the Government would fund an average public sector pay award of only 1% for the four years from 2016-17. As has been pointed out, the Government decided to reject the independent NHS Pay Review Body’s recommendation of a further 1% uplift to all pay scales from 2014-15, stating that there would be an annual increase of at least 1% for Agenda for Change staff in England through either contractual incremental pay or a non-consolidated payment.

[Mr Philip Hollobone (Kettering) (Con)]

I congratulate the hon. Lady on her excellent speech, which I am following closely. Is there not very thin moral justification for the Government rejecting the review of an independent pay body when each of us as MPs has our pay independently assessed and awarded? I can see no justification for saying to hard-working nurses in Kettering, “You can’t have the pay rise that an independent pay body said you should have” when I, as an MP, automatically get a pay rise awarded by our independent body.

--- Later in debate ---

[Catherine McKinnell]

The hon. Gentleman makes an incredibly powerful point, which I hope the Minister has heard.

[Lady Hermon (North Down) (Ind)]

I congratulate the hon. Lady on leading this debate, despite the other debates going on elsewhere. I rarely find myself in agreement with the hon. Member for Kettering (Mr Hollobone), but I fully agree with him. Hundreds of nurses across Northern Ireland feel desperately demoralised by the pay freeze, which has gone on for such a long time. When we got a new Prime Minister, on 13 July last year, who talked about a fresh beginning and new opportunity, they were encouraged, as many of us were, and thought that this would be an ideal opportunity for her Government to show that they mean what they say and that they care about removing pay restraint.

[Catherine McKinnell]

I thank the hon. Lady for that intervention—I think that many of us are surprised that we agree so entirely with the hon. Member for Kettering (Mr Hollobone). She raises an important point about the concern that many people up and down the country feel about some of the Prime Minister’s early actions in her time in office.

There are real concerns that the continuation of pay restraint in the NHS threatens to undermine the very benefits that Agenda for Change was supposed to bring to employers and staff. A centrally imposed cap on pay rises limits employers’ ability to respond to recruitment and retention problems while compromising the extent to which skills and competencies acquired by staff throughout their careers can be properly recognised and rewarded.

The extended nature of the pay restraint imposed first by the coalition Government and now by the Conservative Government also throws up this question: what is the point of having an independent NHS Pay Review Body, given that the Minister is clearly content to impose a figure on NHS Employers and staff each year? Indeed, the Royal College of Midwives has warned that the policy

“undermines the integrity of the system; and will cause lasting damage to the morale and motivation of staff, worsening the staffing crisis in the NHS.”

Despite the widely promised but yet to materialise extra £350 million a week for the NHS, we all know that our health service faces real and significant challenges in financial terms, both now and in the years ahead.

[Richard Fuller (Bedford) (Con)]

I add my congratulations to the hon. Lady on securing this important debate. She has somewhat moved on to the topic of Brexit. In Bedford hospital, to fill vacancies in our nursing staff we have relied on bringing in staff from the European Union. Does she not agree that the Government have a choice: they can continue with pay restraint if they wish, but if so we must retain that ability to attract people from within the European Union and secure the rights of those already here?

[Catherine McKinnell]

The hon. Gentleman raises some important points. I would never admit to having strayed into the subject of Brexit in this important debate on the NHS, but his comments are on the record and should be noted by the Minister. As NHS Employers stated in its 2017-18 submissions to the NHS Pay Review Body:

“The NHS continues to face unprecedented financial and service challenges. The majority of trusts fell into deficit during 2015-16 and the overall shortfall has now reached over £2.5 billion… The financial settlement for the NHS up to 2020 is extremely challenging, with employers set ambitious targets to deliver efficiency savings. At the same time, demand for services continues to rise. Performance indicators show the service is under great pressure as demands for care increase and other public services reduce provision.”

[Andrew Selous (South West Bedfordshire) (Con)]

Does the hon. Lady agree that the physical demands of nursing, as a family member who worked as a healthcare assistant over the summer reflected to me, mean that sometimes conscientious nurses might be tempted to lift patients on their own, such are the demands of the job, and seriously strain their backs? That is something we should have regard to.

[Catherine McKinnell]

I very much agree. That is a factor right across the NHS and the social care sector, and it is an issue we see arising increasingly as staff come under increasing pressure, with the increased pressure to make efficiency savings, which ultimately compromises the health and safety of staff who find themselves in such situations.

Just last week the National Audit Office published its report into NHS ambulance services, which concluded, among other things, that:

“Increased funding for urgent and emergency activity has not matched rising demand, and future settlements are likely to be tougher”.

Crucially, in the context of this debate, it also concluded that:

“Ambulance trusts face resourcing challenges that are limiting their ability to meet rising demand. Most trusts are struggling to recruit the staff they need and then retain them. The reasons people cite for leaving are varied and include pay and reward, and the stressful nature of the job.”

That very much ties in with the concerns the hon. Gentleman raised.

[Dr Daniel Poulter (Central Suffolk and North Ipswich) (Con)]

I congratulate the hon. Lady on her speech; I agree with a number of the points she has made. On ambulance trusts and the point about very senior managers, we need good managers and senior managers in the NHS. However, ambulance trusts are a particular example—my trust, East of England, is an example—of where managers have sometimes received huge pay rises at the expense of frontline staff, who have received pay rises of nought or 1%. That is unacceptable. Does she agree that that further lowers the morale of frontline staff in a difficult period of pay restraint?

[Catherine McKinnell]

The hon. Gentleman makes an important point, which is why it is important that staff under Agenda for Change have the opportunity to have their voices heard today. When the Government look at how the NHS’s limited resources are distributed among the workforce, they need to approach the matter very much in the round.

I have no doubt that the Minister, when he responds to the debate, will be tempted to repeat the Prime Minister’s mantra that the Government are putting an additional £10 billion into the NHS by the end of this Parliament. However, as we all know, that figure has been comprehensively debunked by the hon. Member for Totnes (Dr Wollaston) and her fellow members of the Health Committee, and more recently by the chief executive of NHS England, Simon Stevens, when he appeared before that Committee. Indeed, Ministers confirmed only last week that NHS England will face a 0.6% real-terms fall in per capita funding in 2018.

How would an end to pay restraint for Agenda for Change staff help address the enormous difficulties the NHS faces? As the Royal College of Nursing has highlighted, chronic staff shortages have led to an “over-reliance” on “expensive agency staffing” to the extent that spending on agency nurses equates to about one tenth of the NHS’s total nursing pay bill. Indeed, the Royal College goes on to state that

“the over-reliance on agency staffing is a reflection of a nursing shortage and a direct consequence”

of the limit on pay for nurses working in the NHS.

We therefore have the nonsensical situation whereby nurses are leaving the NHS because of increasing workloads, stress and feeling undervalued following years of pay restraint, so the NHS has to turn to expensive agency nurses to fill the gaps left behind. Those concerns are mirrored by the Royal College of Midwives, which, following a freedom of information request, uncovered that NHS trusts in England spent almost £72.7 million on agency, overtime and bank midwives in 2015—enough to pay for 2,063 full-time experienced midwives or 3,318 full-time, newly qualified midwives.

The Minister might also refer to an increase in the number of nursing and other NHS staff since 2010. Again, that addresses neither the fact that there is currently a shortage of about 24,000 nurses in England and Wales, nor the shortage of nearly 3,500 midwives across the UK. Nor indeed does it address Health Education England’s worrying confirmation that last year some 8.8% of nurses left the NHS—the highest number since 2011. All that surely shows that the NHS is facing a perfect storm, not least in the light of the Minister’s ludicrous decision to axe bursaries for new nursing, midwifery and allied health students—I should perhaps say “Ministers’ decision”, rather than directing that comment at the Minister of State—the Government’s continued disgraceful failure to confirm the long-term future of 33,000 nurses from other EU countries working in the NHS, and the fact that one third of nurses are due to retire in the next 10 years. I look forward to hearing him explain how continued pay restraint for Agenda for Change staff will help resolve the staffing crisis.

[Dr Poulter]

The hon. Lady makes a good point about bursaries. Most nurses enter the profession in their late 20s—at about 28 or 29. We are talking about a recruitment challenge in nursing and the fact that the number of applicants for nursing courses dropped by 25% this year. Surely that demographic group needs the bursary as an enticement into nursing.

[Catherine McKinnell]

The hon. Gentleman makes another valid point. I hope that the Minister is listening, because although we are focusing specifically today on pay restraint for Agenda for Change staff, there is a much wider issue for the Government to take on board. A variety of factors is affecting recruitment and retention of NHS staff. The axing of bursaries is just one significant factor that the Government should seriously examine, and reverse.

What has the pay restraint for Agenda for Change staff meant to individual nurses, midwives, paramedics, cleaners and other healthcare professionals since 2011? Depending on the measure of inflation used, it has resulted in a drop in real-terms earnings of up to 14%. To put that in context, the trade union Unison has calculated that it is equivalent to annual pay cuts of £2,288 for a cleaner, £4,846 for a nurse, £6,134 for a midwife and £8,364 for a clinical psychologist. Indeed, ahead of the 2017-18 NHS pay review process, Unison surveyed its members working in the NHS and received the following responses, which are a matter of deep concern: nearly two thirds felt worse off than they did 12 months ago; 49% had asked for financial support from family or a friend; 13% had used a debt advice service; 11% had pawned possessions; 11% had used a payday loan company; 15% had moved to a less expensive home or remortgaged their house; and just under one fifth took on paid work in addition to their main NHS job, 64% of whom did so because their NHS salary was not enough to meet their basic living costs. More than 80% said they had considered leaving the NHS in the past year.

[Dr Rupa Huq (Ealing Central and Acton) (Lab)]

My hon. Friend is making a powerful speech. Does she share the concerns of the London nurses at the lunchtime lobby today, who said that punitive London housing costs are making the situation even more acute? They feel that they are being forced out of the capital, which needs nurses, and that what is happening is almost social cleansing by the back door, pricing nurses out of our city.

[Catherine McKinnell]

Yes, I share those concerns, particularly about the significant shortage of nurses in London. The issue affects places throughout the country, but I fully appreciate the acuteness of the situation in London.

The findings that I have set out are mirrored in the most recent Royal College of Nursing employment survey of its members. It found that 30% had struggled to pay gas and electricity Bills, 14% had missed meals because of financial difficulties, 53% had been compelled to work extra hours to increase earnings, and 32% were working extra night and weekend shifts to help pay bills and meet everyday living expenses. The RCN stated:

“This corresponds with our year on year increase of 30%, over the past five years, on the number of our members seeking specialist money advice from our RCN Welfare Service. This contact from our members focuses predominantly on dealing with unmanageable consumer debt.”

It is shocking and depressing stuff. It is bad enough that the Government continually expect NHS staff, many of whom are at breaking point, to do more with less and treat more patients with fewer resources in what are usually physically and psychologically demanding roles, but to expect them to do so while they face such anxiety and stress over their own financial situation is completely unacceptable.

We do not need to take Unison or the RCN’s word for what is happening. I have received emails containing powerful testimony from NHS staff in my constituency. One explained:

“I have been qualified as a children’s staff nurse for 12 years and I reached the top of my pay scale four years ago. I have not had a pay rise since. 4-5 years ago I was in a comfortable position, I could afford the basics and if I wanted extras like holidays or treats I would just do overtime or extra shifts to afford these luxuries. However, due to the fact my pay against my cost of living has reduced by 14%, I now struggle to afford the basics and am having to do extra shifts just to be able to provide food and pay my bills… I am missing out on valuable time with my family as I have to work nearly every weekend in order to be able to get a wage that can cover our costs. It is now becoming such a stretch each month that I may have to leave nursing and find a job that pays me better... Working as a children’s nurse in a busy A&E unit is amazing and worthwhile, but it is very stressful. On a daily basis we deal with and see things that are devastating and can be difficult to switch off from. Our pay should reflect this.”

Another constituent challenged the claim made in the Government’s response to the e-petition:

“Average earnings for qualified nurses were £31,214 in the 12 months to June 2016”.

She described herself as an average nurse in her 40s with a partner and a child:

“I have been qualified and working in the NHS for 11 years. I don’t earn £31,214. The top of my band (band 5) is £28,464. So, I am paid about £14.50 an hour to clean up faeces, vomit, blood and other bodily fluids. To hold the hands of patients who are dying. To comfort the relatives of patients who are dying. To maintain complicated machinery/equipment that is keeping a person alive whilst watching the newly-qualified staff nurse who doesn’t feel confident and make sure they don’t do anything dangerous.”

Another constituent painted a very concerning picture about her financial situation. She recently qualified as a nurse—a year and four months ago. She is a single parent of three children, and commented:

“After studying hard for 3 years mixing university, placements and guided learning, I gained my degree only to find myself in more dire financial circumstances than I was as a student.

I live to a tight budget, I drive a car that is 16 years old, I don’t smoke or drink, and I rarely socialise with my friends unless it’s a special occasion. This month I was paid £1,450 after tax—from that £300 is childcare; £400 is rent; leaving £750 for the month covering gas, water, phone, food, insurance etc. I also receive £35 tax credits a week which covers my daughter’s bus fare to college and her lunch money.

I am a qualified professional and yet I would class myself as being on the breadline. I know there are others in greater need than I am; however I feel like I work hard and sacrifice my family time for nothing.”

Finally, a senior sister with 30 years’ experience in an acute trauma unit explained:

“After six years of pay restraint, I now see nurses struggling day to day to make ends meet. Those who have stayed are now planning to leave the NHS early and newly qualified nurses are unable to stay without reasonable remuneration.

I feel like I grieve every day for my profession now. We have an NHS workforce currently willing to work as hard as the service asks them, but this goodwill is now eroding faster than I have ever seen in all my years’ service.

I am retiring within a couple of years. This request comes not for me, but for those who come after me and who will be caring for me and my family in the future.”

It is clear that our NHS is facing a crisis, yet the people the Government entirely rely on to make the NHS work are being badly let down. Nobody would suggest for a minute that those working in the health service do it for the money. However, we have reached a situation in which nurses, midwives and other invaluable NHS staff are struggling to pay their bills or put food on the table, or are pawning their possessions or taking out high-interest loans just to get from one month to the next.

How can we expect people to continue to provide high-quality care to us and our loved ones in what are already increasingly challenging circumstances when they are also facing this level of stress and anxiety at home? I strongly urge the Government to look at this situation again and to take on board the concerns being raised not only by organisations such as Unison, the RCN and the RCM, but by NHS frontline staff who are saying loud and clear that this pay restraint simply cannot continue.

--- Later in debate ---

[Mr Dunne]

They do, and it is important for hon. Members to understand the impact of incremental pay rises. The truth is that some half a million Agenda for Change staff are eligible for incremental pay rises each year of more than 3% on average, on top of annual pay awards. I am not saying that NHS staff should have no concerns about the level of pay award they receive; what I am saying is that since the 2008 recession, NHS earnings and public sector earnings have generally compared well with those in the wider economy.

A number of hon. Members talked about regional pay and in particular the challenges of working in London. Of course, we are very sympathetic to individuals who face the pressures of working in London—in both inner and outer London—and that is why we have the increments available to recognise the extra costs of living there.

[Catherine McKinnell]

rose—

[Dr Poulter]

rose—

--- Later in debate ---

[Mr Dunne]

I will be happy to look at that; if my hon. Friend would write to me with his precise question, of course we will give him an answer.

[Catherine McKinnell]

Will the Minister give way?

[Mr Dunne]

I was about to come on to agencies, but I will give way to the hon. Lady.

[Catherine McKinnell]

I thank the Minister for giving way. I am slightly concerned by his response, in that he does not seem to be taking on board the very significant concerns that have been raised right across the board, not only by unions but, significantly, by the National Audit Office. Last week, in its report on ambulance services, the NAO said:

“Ambulance trusts face resourcing challenges that are limiting their ability to meet rising demand.”

One of the “challenges” that is specifically cited is “pay and reward”, which is hampering recruitment. It is not just the unions and NHS staff who are saying these things; it is the NAO and other bodies as well.

[Mr Dunne]

The hon. Lady refers to ambulance staff. In recent weeks—just before Christmas, in fact—the Department agreed a deal with trade unions whereby paramedics working in ambulances would have their banding increased from band 5 to band 6, phased in over two years so that they can demonstrate they have the increased skill competence required. That represent a significant increase in reward for paramedics; some 12,000 paramedics will receive a higher pay award, precisely to address recruitment challenges for that specific profession. So we are listening and we are doing something about this issue. I will try to give the hon. Lady other examples of where we are responding to specific pressures.

--- Later in debate ---

[Catherine McKinnell]

I do not think that anyone could argue with what the Minister has just said about NHS staff being proud of what they do and wanting to continue. But even while this debate has been going on, I have seen several tweets. For example, one asks:

“please tell me what the RCN”

—it says the Royal College of Nursing, but I say the Government—

“is going to do. I am seriously starting to struggle now”.

Others say that they

“know so many young people who would be great nurses but lack of bursary & low pay put them off”.

Those tweets reflect NHS staff’s real live experiences of the current pay situation under Agenda for Change and the continued pay freeze.

I thank all right hon. and hon. Members who have contributed knowledgeably and passionately to this very important debate, whether in speeches or interventions. I feel very strongly that we have won the argument today. There is a high degree of cross-party consensus on many of the issues we have outlined, and the Government are either burying their head in the sand or deliberately not facing up to significant challenges regarding pay, recruitment and retention for NHS staff. As my right hon. Friend the Member for Leigh (Andy Burnham) pointed out, by failing to address the issue we are taking advantage of those who work in the NHS and are pushing their good will to the limit. What disturbs me even more is that not only their good will is being tested; their very ability to survive in the job is being tested, too. I have received a number of testimonies and seen the evidence—the Government seem to deny the figures, even though they are there in black and white and I set them out clearly in my opening speech— about the real-terms pay cuts that NHS staff are facing. They simply cannot manage, and that is a shameful situation.

I said in my speech that it is the very people the Government rely on to deliver a high-quality NHS service in extremely challenging circumstances who are being badly let down by the Government’s current policy. How have we reached a situation where nurses, midwives and other invaluable NHS staff are struggling to pay their bills and put food on the table? They are pawning their possessions and turning to payday loans. On the softer side, they are turning to agency work to top up their pay—not to afford the luxuries in life, but the basics. It is a completely unsustainable situation, and the Government must take urgent action to lift this burden off our NHS staff so that they can do their job, which is caring for us and our loved ones without the fear of financial insecurity hanging over their every working day.

Question put and agreed to.

Resolved,

That this House has considered e-petition 168127 relating to pay restraint for Agenda for Change NHS staff.

Terminal Illness: Support

Catherine McKinnell Excerpts

Monday 5th December 2016 Commons Chamber

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

It is appropriate that this debate, on an issue that will touch millions of people and their families at some point in their lives, should take place today, given that 5 December has been designated International Volunteer Day by the United Nations since 1985. Its purpose is to

“celebrate the power and potential of volunteerism”.

The UN states that IVD is

“an opportunity for volunteers, and volunteer organisations, to raise awareness of, and gain recognition for, the contribution they make to their communities”.

This year’s IVD theme of #GlobalApplause seeks to give volunteers around the world the recognition they deserve, while also “giving a hand” to potential volunteers by encouraging them to give up some of their time for others.

Of course, the link between IVD and this debate is that the vast majority of end-of-life palliative care outside hospital is provided by the charitable sector and only partly funded by the NHS. For that reason, people who donate their money to—and, crucially, their time through volunteering with—end-of-life-care charities play an immeasurably important role in ensuring that the majority of us, and our loved ones, will get the right care and support when we are dying. We will need more volunteers as more people die each year and the demand for high-quality palliative and end-of-life care increases, which is something I will return to later.

I have long been an advocate of the need for good palliative care and support to be available to those who need it, but it is as a result of my recent work locally with the charity Marie Curie that I sought this debate. As I am sure all hon. Members will know, Marie Curie has been providing care and support for people living with terminal illness and their families for the last 65 years. It was able to care for more than 40,000 people across the UK in the last year alone, in large part thanks to the support of more than 10,000 volunteers.

In October, I had the absolute privilege of meeting my constituent Don Lowther, who has terminal cancer, and Faye Morrison, a 21-year-old student from Gateshead who has befriended Don through Marie Curie’s helper service. This pioneering service, which has been available in the Tyne and Wear area since last year, matches trained volunteers with people living with terminal illnesses, providing them and their loved ones with companionship, emotional support and practical help with the aim of ensuring that their quality of life is the best it can be in its final stages.

Since last December, Faye has been making regular visits to see Don in his home, and over that time they have developed a close friendship. Faye is able to ensure that Don, who can no longer drive, can still get out of the house to places such as North Shields for fish and chips. Perhaps most importantly, Faye is a non-family member who Don can talk to and share his concerns with. The impact of Faye’s volunteering on Don’s quality of life, and that of his wife’s, is clear to anyone who meets them, but Faye is the first to say that she has—from giving her time and being part of the helper service—gained as much as Don has.

The Marie Curie helper service also helps to co-ordinate local services, enabling people affected by a terminal illness and their families to understand what is happening, and ensuring that they are supported throughout this challenging journey. In the case of Faye and Don, this has involved signposting Don to the services provided by Marie Curie’s Newcastle hospice, which I also heard more about from Lead Nurse Michelle Scott when I recently visited this facility, which is located in the west end of the city in the constituency of my hon. Friend the Member for Newcastle upon Tyne Central (Chi Onwurah).

I saw for myself the newly opened complementary therapy and relaxation area, with its Alnwick garden theme, and the different types of accommodation available to patients and their carers, including for respite care. I learned more about the wide range of medical and nursing care, physiotherapy and occupational therapy available, and about the practical, psychological, emotional and spiritual support provided by the highly experienced hospice team. What I took away most from my visit, however, was the hospice’s absolute dedication to celebrating life and to ensuring that those using its services—whether terminally ill parents with young children or those, such as my constituent Don, who use their day services and activities—receive the best possible support and enjoy the best possible quality of life as their time comes to an end. Don told me he was concerned that once he stepped inside the hospice, he would never leave, but that is just not the case. Thanks to the helper service and Faye, he was signposted to the care and support provided at all stages of terminal illness. That support is not negative about death and dying, but treats them as a part of life. Of course, not all Marie Curie’s nursing care takes place in a hospice setting, because the charity’s nurses also provide overnight care in people’s own homes.

Marie Curie is certainly not the only charitable organisation providing end-of-life care in the Newcastle area. Other vital organisations include Macmillan Cancer Support, with whom I recently had the pleasure of enjoying coffee and cake at the Lemington Centre and St Cuthbert’s Primary School in Walbottle, as well as St Oswald’s hospice in Gosforth, which has worked to

“make the most of time and improve quality of life for everyone in the North East living with an incurable condition, and their families”

for the past 30 years.

Despite the incredible efforts of these charities and the NHS for people who are dying, the risk that they will not get the care that they need to manage their symptoms and to maintain their quality of life until the end of their life is worryingly high. Research undertaken last year by the London School of Economics on behalf of Marie Curie found that a deeply concerning 92,000 people who need palliative care in England each year are not receiving it. That means that one in four people are not getting the good end-of-life care—care for managing pain and other symptoms, alongside psychological, social and spiritual support—that they clearly need.

The people who miss out most frequently on this support are those with a terminal illness other than cancer, such as heart failure or chronic pulmonary disease. Indeed, written evidence submitted by the National Council for Palliative Care to the Health Committee’s inquiry into end-of-life care, which was published last year, drew attention to the fact that people with cancer access over 75% of specialist palliative care services, although cancer causes around 30% of all deaths. Concerns about the availability of palliative care for people with non-cancer diagnoses have been raised with me by a constituent living with idiopathic pulmonary fibrosis.

Others who are likely to miss out are people aged over 85, including those with dementia, despite the fact that dementia is now identified as the leading cause of death in England and Wales. Written evidence submitted by Age UK to the same Health Committee inquiry highlighted that while one third of all deaths are of people aged over 85, only around 15% of the people who gain access to specialist palliative care fall into that age group. Worrying inequalities already exist regarding the quality of end-of-life support available, depending on a person’s illness, age and, as ever, where they happen to live.

A growing concern is that the existing system, which is already unable to provide care for all who need it, is coming under ever greater pressure as our social care services fast approach breaking point. Marie Curie states that in its own services, it is seeing people waiting weeks in hospitals and hospices for social care packages to be put in place so that they can get home or into a care home to spend their final days in the place of their choosing. Very sadly, that situation means that it is not uncommon for people to die while waiting. This does, of course, have a terrible human impact, not only on the person dying, but on their families, making what is already a hugely traumatic situation immeasurably worse. This state of affairs is also totally cost-inefficient for our NHS, which could be using those hospital beds for people who need acute care.

The situation I have outlined will come as no surprise to any hon. Member, given that adult social care budgets have been cut by some £4.6 billion, or 31% in real terms, since 2011. They continue to fall in the face of an increasingly elderly population and therefore increasing demand. I have no doubt that the Minister will want to champion the social care council tax precept that the Government have allowed local authorities to raise for this purpose, but I gently remind him that that is anticipated to raise £1.4 million a year in Newcastle, yet the city council faces a social care shortfall of some £15 million.

[Thangam Debbonaire (Bristol West) (Lab)]

I thank my hon. Friend for bringing this issue to the House’s attention. She is making a powerful speech. Let me also pay tribute to the hospices in my constituency— St Peter’s hospice, and the hospice that cared for my father and my mother-in-law in their dying days.

Does my hon. Friend share my concern about the fact that the Government have not made adequate progress in meeting the recommendations of last year’s inquiry into end-of-life care by the Health Committee? Will she join me in asking the Minister to explore the question of how well the five principles of end-of-life care are being followed across the country?

--- Later in debate ---

[Catherine McKinnell]

I think that we would all like the Minister to try to explain that key point. Marie Curie’s main concern, which I know is shared throughout the sector, is that the provision of palliative care is simply not growing to meet the demand for services. That is clearly extremely troubling, given that one in four people are already unable to access the end-of-life care and support that they need. Like the rest of our health and social care services, the palliative and end-of-life care sector—including those who provide such care in hospitals and care homes—is facing a demographic crisis. More people are dying each year, at an older age, and with more long-term and often complex conditions. Indeed, the number of deaths per year will rise by 100,000 over the next five years.

Given those facts, when the Government announced in July this year in their

“response to the independent review of choice in end of life care”

that they would establish a board within NHS England to implement the recommendations of the review, it came as a grave disappointment to all involved in the sector that they had chosen to reject the review’s key recommendation that £130 million of funding should be made available at the next spending review to

“invest in social care and NHS-commissioned services, to deliver a national choice offer in end of life care.”

Along with my hon. Friend the Member for Bristol West (Thangam Debbonaire) and, I am sure, others who are listening to the debate, I ask the Minister to state clearly how, without the additional funding that was recommended by the independent review, the Government will ensure that palliative and social care services grow to meet existing and increased demand in the coming years.

[Thangam Debbonaire]

Does my hon. Friend agree that the autumn statement provided an ideal opportunity for the Government to produce sums to meet the ever-increasing demand for social and end-of-life care, and that that opportunity was missed?

[Catherine McKinnell]

That is a good point. Everyone was disappointed not to hear a commitment from the Government. I think we would all like to know how, without those additional funds, the Government will end the distressing and unacceptable circumstances in which 92,000 people—one in four—are missing out each year on the care and support that they and their families need at the end of their lives, and how on earth the Government will prevent that deeply concerning figure from growing ever bigger.

I am acutely conscious that there are many more issues that I could have raised in a debate about such an important issue. They include the provision of end-of-life care for children and young people with life-shortening conditions, which, according to the charity Together for Short Lives, is often

“inappropriately coupled with the palliative care needs of adults, when their needs can be much more complex”.

A key concern for that charity, and for all of us, is that the number of children and young people affected by life-shortening conditions is not properly monitored, which makes it impossible for the Government, the NHS and local authorities to plan properly and budget for their needs.

Another serious issue relates to the fact that our welfare system can let down too many people with debilitating and terminal conditions such as motor neurone disease. While welcoming the recent and long overdue announcement that people with severe lifetime conditions will no longer have to undergo reassessments for employment and support allowance, the Motor Neurone Disease Association and many other charities remain extremely concerned about the Government’s determination to devolve attendance allowance to local authorities, and the impact that that could have on the vital support that people with extremely challenging conditions currently receive.

I have raised a number of issues with the Minister this evening about the additional funds for end-of-life care that the NHS, charities and their much-needed volunteers clearly need. When people do not have the palliative care that they need, there are real and damaging consequences. They may die in pain or discomfort, which causes distress not just to them, but to their families, friends and loved ones. That will be avoidable if the Government can make a commitment to those people. I look forward to hearing the Minister’s response to the important concerns that I have outlined this evening.

--- Later in debate ---

[David Mowat]

That is a very reasonable request. That intervention was not quite what I was expecting, but it is entirely reasonable and I will commit to do that either in debates such as this or at Question Time, or whenever. I am unsure whether a statement would be appropriate, but it is a reasonable thing to request of a Minister and I am happy to do it. I will at least write to the hon. Lady on the process, because I am determined that the programme of work will be transparent and meaningful with clear deliverables that achieve what we need to achieve.

In addition to implementing the choice review, other ongoing and day-to-day work needs to happen. The Liverpool care pathway was pretty much supplanted last year by the five priorities for dying people that were mentioned in an earlier intervention. We are trying to embed those things within the structure of the NHS. They exist in training programmes, in Health Education England, and in the choices that people make when working in this sector. It is not rocket science; the priorities relate to sensitive communication, the need for individual plans covering food and drink, and also spiritual things for those who need or want them. Fundamental to all this—it should not really need saying —is that the dying person is involved in all aspects.

We put end-of-life care as a priority in the NHS mandate. Clinical commissioning groups must commission end-of-life and bereavement care, and there are NICE guidelines for that. That does not mean that it is not patchy, as the hon. Member for Newcastle upon Tyne North said, but those are the requirements. When the CQC evaluates care homes, hospitals and hospices, it specifically looks at end-of-life care, and those that want high rankings will need to address such things and work effectively.

I talked about milestones. One important initiative that I expect to come out of the choice review is electronic palliative care records, through which care plans are accessible to the many different workers who need access. I recently saw that happen in London, where the system is called “Coordinate My Care”. The idea is that if a person is in need of an ambulance or paramedic, the paramedic will have access to the care record on the way to the call-out. The record might explain that the person may not want to go to hospital, depending on the issue, and such decisions will become embedded in the process, which is important and good. I want that technology to be rolled out as quickly as possible.

[Catherine McKinnell]

I was concerned at the beginning of the Minister’s remarks that he sounded complacent about this issue, but he does certainly seem committed to making this review work over the next few years. Will he just acknowledge that if the NHS is not able to get the support from the social care sector and is not able to utilise the funding required, it will fail in its efforts? It will fail unless the funding is there within the community sector and the NHS itself in order to achieve what the Minister sets out as a very important strategy going forward.

[David Mowat]

I am getting towards the end of my speaking time, so I will finish by answering that as best I can. Of course money matters, and every process works better if there is plenty of money for it. The facts of the matter are that both adult social care and the NHS are under cost pressures. To be honest, that will always be the case in every system, and I just gently say to the hon. Lady that she may be surprised to know that we spend about a third more on adult social care, which is a particular responsibility of mine, than either France or Germany.

[Catherine McKinnell]

The Minister acknowledged that the challenge in addressing this issue properly is often the patchwork nature of services in our country and the postcode lottery. He also acknowledged that some of the areas that fare the worst are the most deprived, and they are also the areas facing the biggest cost pressures in terms of social care funding. Will he acknowledge that something needs to be done to ensure that that does not undermine these efforts?

[David Mowat]

This is not the autumn statement, and I cannot make commitments on funding other than to say that many Members on both sides of this Chamber would like to see, when the time is right, more funding for our vital public services. I again just gently make the point to the hon. Lady that we spend considerably more on adult social care than countries such as France and Germany, those it would be reasonable to compare us with, and it is not just about money in terms of the delayed transfers of care performance of different councils—it is hugely different.

Let us agree that what really is important is that over the next few years we implement the choice review: what is important is the Government’s commitment to implement that and our clear intent, as signalled by Bruce Keogh leading the implementation board, that we will be held accountable for it. I will be held accountable for it, and I will report back to the House in due course on that.

I thank the hon. Lady for raising this important issue.

Question put and agreed to.

Community Pharmacies

Catherine McKinnell Excerpts

Wednesday 2nd November 2016 Commons Chamber

[Kate Green (Stretford and Urmston) (Lab)]

rose—

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

rose—

[Jonathan Ashworth]

Because she represents my mother’s home town, I will give way first to my hon. Friend the Member for Stretford and Urmston.

[Jonathan Ashworth]

My hon. Friend is absolutely right. That is why the cuts have aroused so much opposition from not just Labour but Conservative Members.

[Catherine McKinnell]

My hon. Friend is making an excellent speech. Over the past few years, a significant amount of work has been put into the Think Pharmacy First campaign, whose aim is to take pressure off GPs, ambulances and A & E services, but is “Think Pharmacy First for cuts and closures” really what the Government have in mind?

[Jonathan Ashworth]

My hon. Friend has made a powerful point, which completely blows apart many of the arguments that the Government have advanced in recent years.

--- Later in debate ---

[Dr Whitford]

It is crucial that the service covers all areas, including those that are deprived and those that do not have good public transport. Distance is not everything; this is also about how people travel that distance. In many places, the distance involved might not be that great, but there simply may not be a bus going in the required direction.

[Catherine McKinnell]

I wanted to make this point to the Minister: the closure of community pharmacies will clearly lead to a poorer service, a loss of patient choice and poorer health outcomes for those in more deprived parts of the country. Is this not just another example of Government short-term cuts that will cost us more in the long term?

[Dr Whitford]

If this is introduced badly, the cost will be greater in the long term. When the Minister talks about a more service-based approach, I think that he aspires to something more like the Scottish model, which I would commend. I just feel that this is being done “backside forward”.

Meningitis B Vaccine

Catherine McKinnell Excerpts

Monday 25th April 2016 Westminster Hall

[Ben Howlett]

I thank the hon. Gentleman for his intervention. He is quite right to pick up on the fact that the long-term costs to families need to be taken into account when the JCVI makes its decision about whether to extend vaccinations; I will come on to that issue later. It is quite clear that without the support of many of our constituents—those who fundraise and do so much work to help support families in need—those families would be in a much more challenging situation.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I commend the hon. Gentleman on leading this debate. He gave the very powerful constituency example of Harmonie-Rose. We heard evidence from the parents of Faye Burdett, who made it very clear how fast the disease can strike, and how vital it is that meningitis is treated as quickly as possible to minimise damage. Does the hon. Gentleman agree that, as we heard in evidence, children under the age of five have difficulty communicating the symptoms that they are experiencing, and that is one of the factors that should be taken into account very carefully when considering extending the vaccination programme to those in that age group? They cannot communicate, which delays the delivery of the medical treatment that they so vitally need.

[Ben Howlett]

I thank the hon. Lady for her intervention, and I agree. Without giving away what I am about to say, I think that the evidence is quite clear on that, and I hope that the JCVI will look at that in due course. The fact is that Harmonie-Rose and many other children see their lives dramatically changed, or even cut short, by this tragic and awful disease, and it is time that we did something about it, here and now.

The petition that led to the debate was started by Lee Booth, who was told that his eight-month-old child was too old to qualify for the meningitis B vaccine. Lee was quite rightly uneasy about that, as the group most susceptible to contracting the disease are babies under the age of one. I am sure that we were all pleased when the Government made the unprecedented announcement that from September 2015 all newborn babies would be given the vaccine, making the UK the first country in the world to make that provision.

--- Later in debate ---

[Ben Howlett]

I met GlaxoSmithKline and we had a conversation on the issue. There needs to be a long-term conversation in the here and now with GlaxoSmithKline about the pricing of a catch-up programme. We heard an awful lot of evidence about that, and JCVI needs to take it into consideration. As part of that, I lend my support to those campaigning for a full review of the cost-effectiveness methodology for immunisation programmes and procurements, or CEMIPP, its understanding of life benefit, and what it takes into consideration when making a judgment call on life benefit. That has a huge impact on how JCVI makes its decisions. I hope that a review would have a wider benefit for all those children who might be put at risk.

From September 2017, we will start to receive information from the current vaccination programme of babies under the age of one, and we can begin to assess the success of the new approach. In September 2016, we will get early preliminary data on the early introduction of the vaccine. That will hopefully help JCVI readdress its decision on extending the vaccine to those aged up to five. As the UK is the first country to use the meningitis B vaccine, it is understandably difficult to predict its effects when administered on a large scale. The data will be incredibly useful in helping to formulate a plan from September 2017, but it is important to remember that while we sit waiting for the data, children are contracting the disease, with life-changing consequences. Sadly, in some cases they are dying. Families going through that trauma will not be comforted by the fact that from 2017 we will have a better idea of what to do.

It is the opinion of many research organisations that while we wait for the data, we should prioritise protecting the most vulnerable from contracting the disease through a one-off catch-up programme for children under the age of five. They are the age group at the next highest risk of meningitis B infection. That one-off campaign would put many minds at ease and help the future eradication of the disease. The current vaccine only has a two-year shelf life, so it makes sense for the UK to use the vaccines while it can, to catch all those under the age of five. The evidence that we heard showed that the number of cases falls substantially after the age of five. While it is always uncomfortable to set a cut-off age, that would be a sensible one to introduce in the here and now.

At the heart of every successful immunisation campaign is uptake of the offer. Information shows that uptake for the under-ones is strong; that is unsurprising given what the papers are publishing, and the sad stories of families who have suffered the devastating effects of their child contracting the disease. We must ensure that uptake is continually high and does not negatively affect the uptake of any other vaccinations, especially if a one-off catch-up programme is undertaken.

[Catherine McKinnell]

This is an opportune moment to highlight one of the other points that came out of the evidence we took in Committee: while vaccination is vital, public awareness is a huge concern for everyone. It is not only parents who need the best possible awareness of the symptoms; medical staff need it, too. Perhaps that awareness is not high enough. It would be good to hear from the Minister what the Government will do to ensure that public awareness and awareness among medical personnel is the best it can be, to ensure that the disease can be treated as quickly as possible.

[Ben Howlett]

We both heard the evidence that we need to increase awareness of meningitis B. Just because someone has had the vaccination, it does not mean that they are 100% certain not to contract the virus. We have to ensure wider awareness, not just among clinicians, but in nurseries and schools. That will ensure that the issue is higher up their agenda. I have seen some of the highly successful campaigns run by the Department of Health, and I hope we can support the Department in pushing more of those campaigns in the future.

We heard evidence about the importance of vaccinating young children, but Meningitis Now and the Meningitis Research Foundation point out that vaccinating teenagers could be the key to protecting the whole population from meningitis B, knocking out the infection at source before it can spread. That is because teenagers may be responsible for a high proportion of disease carriage. During our evidence sessions, we discussed at length the evidence to back that up. Vinny Smith, the chief executive officer of the Meningitis Research Foundation, explained that the bug lives in the noses and throats of people, particularly teenagers, but it does not live in everybody. The idea is that the key carrier group is targeted with a vaccination campaign that would hopefully protect the most at risk groups.

That targeted immunisation programme could be the solution when it comes to eradicating the disease. However, in-depth research has not yet been done on how effective that would be. It is hoped that the programme would severely reduce contraction of the disease, but it is unclear. What is clear is that a better understanding is at least three years away. We need to get the research process started as quickly as possible. It could benefit those young children who have not been vaccinated by reducing the chances of exposure. It is clearly too soon to advocate the immunisation of all teenagers, given that evidence is still unclear about the effects of immunisation beyond prevention in adolescents. When the research process is under way—I repeat that I hope it starts sooner, rather than later—a short-term option would be to extend the vaccination programme to under-fives who are at a higher risk of contracting the disease.

GlaxoSmithKline, which produces the vaccine, has said that it is prepared to work with the Government to ensure that there are enough vaccines for the catch-up period. The company will be under pressure from other nations looking to focus on their vaccination programmes. The Government need to place an urgent and vocal emphasis on vaccinations, as well as prevention. They would be an important voice in encouraging vaccination producers to have greater confidence in investing in the UK. All the families in the UK who want the reassurance a vaccination would bring would much rather we had a stockpile of vaccinations used in a one-off catch-up programme than for our country to miss out because we were slower on the uptake than our competitors. I hope that the urgency of the discussion is at the forefront of the Minister’s mind.

--- Later in debate ---

[Helen Whately]

I completely agree with my hon. Friend and neighbour in Maidstone. I know she has been contacted by many of her constituents about this issue. We need to ensure that the formula used to calculate whether the vaccine should be introduced includes things such as peace of mind and the level of fear about meningitis. It should also take into account the public preference for protecting children from illness.

[Catherine McKinnell]

The hon. Lady is making an important point. My understanding—I would be grateful if the Minister would clarify this in her response—is that in calculating the cost-effectiveness of the meningitis B vaccination, the JCVI has not fully considered the potential outcome for those children who contract meningitis but survive and the long-term costs for them and their families for the rest of their lives. Such costs are often borne by the state, so, along with the factors that the hon. Lady is outlining, there are other financial costs that have perhaps not been considered fully.

[Helen Whately]

I thank the hon. Lady for that comment. We may well hear from the Minister that some of those extra costs have been taken into account, but when the Select Committee took evidence a few weeks ago we heard from the Meningitis Research Foundation and others that the cost-effectiveness model tends to privilege near-term costs over long-term costs and benefits. It does not look at the long-term lifetime health impacts, positive or negative, from a person having had or not had meningitis.

That brings me to something called the discount rate, which is applied at 3.5%. I have been told that, as a result of that discount rate, the benefits of a vaccine reach zero by the time somebody is 27. People clearly live for much longer than that, so is enough account being taken of the long-term benefits of a vaccination programme when cost-effectiveness is calculated? For instance, it has been calculated that if a 1.5% discount rate were used instead of the 3.5% rate, the answer would be different and a catch-up programme for under-fives would be cost-effective. The NICE guidance states that a 1.5% discount rate can be applied if health benefits would be attained over long periods and for public health interventions. Surely vaccinations should fall under those categories?

Dementia and Alzheimer’s Disease

Catherine McKinnell Excerpts

Tuesday 12th April 2016 Westminster Hall

[Jim Shannon]

I thank the hon. Gentleman for that point.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

This is such an important debate, and it is really important that we air all of these issues. It is about the simple things in many cases, but it spreads across a wide network. One of the respite centre residents of Dementia Care—an excellent charity in my constituency—was recently admitted to hospital for a routine procedure but was not released from hospital until 3 am, which threw their entire programme for the next day. More carers were needed to get them back into a routine. Simple things make a huge difference to such people and those who care for them.

[Jim Shannon]

The hon. Lady speaks with knowledge. I thank her for that contribution.

There are ten key indicators of the quality of life of people with dementia: communication difficulties; relationships; environment and surroundings; physical health; a sense of humour; independence; a sense of personal identity; the ability to engage in activities and the opportunity to do so; difficulties with eating, drinking and swallowing; and, of course, their experience of stigma. All of those things are important.