Learning Disabilities Mortality Review

John Howell Excerpts

Wednesday 15th May 2019 Commons Chamber

[Caroline Dinenage]

I thank the hon. Lady for her question. This very thorough consultation has received more than 5,000 responses. It has very recently concluded, and we are now going through those consultation responses, some of which are quite detailed. We hope to respond in the next two or three months to set out how we would like to move forward on this.

[John Howell (Henley) (Con)]

This question is similar to the “do not resuscitate” one. I am aware that a number of practitioners use seclusion, segregation and restraint against patients in the system. What is the Minister doing to stop that happening?

[Caroline Dinenage]

This is really important. We have seen an increase in reports of segregation and restraint, but that is partly because we have seen much better recording of the data. That is also very important, because we need to understand where people are being kept in seclusion or restrained inappropriately. The Secretary of State has asked the Care Quality Commission to review the matter and make recommendations about the use of restrictive interventions in settings that provide all sorts of residential care. The first part of that review will be reporting back very shortly.

British Sign Language Users: Access to NHS Services

John Howell Excerpts

Wednesday 15th May 2019 Westminster Hall

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

I beg to move,

That this House has considered access to NHS services for British Sign Language users.

It is a pleasure to serve under your chairmanship this afternoon, Ms Ryan. I am pleased that we have the BSL interpreters here in the Chamber for the debate and that it will also be covered by simultaneous live BSL interpretation and subtitling on the parliamentlive.tv footage.

I have been trying to secure a debate on this important subject for several months, because for some time now I have been raising the issues with the Government and a number of other organisations. This afternoon’s debate is timely as well, taking place just days after Deaf Awareness Week, which was from 6 to 12 May. As I am sure hon. Members and the Minister are aware, Deaf Awareness Week aims to increase awareness and challenge perceptions of hearing loss and deafness, promote positive aspects of deafness, promote social inclusion and raise awareness of the huge range of organisations throughout the country that support deaf people and their family and friends. That includes the ITV SignPost team, which offers content production, access services and training from their base in Gateshead.

Sadly, given the subject of the debate, there appears to be no reference to Deaf Awareness Week on the websites of the Department of Health and Social Care, NHS England or indeed the Department for Work and Pensions, the Department with overall responsibility for cross-Government disability issues. I am pleased that many local NHS organisations, including the Newcastle Hospitals NHS Foundation Trust, have marked Deaf Awareness Week. The key thrust of my argument, however, is that all public bodies should be aware of and provide for the needs of deaf people, including BSL users, not just one week of the year but 52 weeks of the year. As I will highlight, on far too many occasions that is certainly not happening.

According to the British Deaf Association, the UK has about 151,000 users of British Sign Language, of whom 87,000 are deaf. That first figure does not include professional BSL users, such as interpreters and translators, unless they use it at home. As the BDA has described:

“Sign languages are fully functional and expressive languages; at the same time they differ profoundly from spoken languages. BSL is a visual-gestural language with distinctive grammar using handshapes, facial expressions, gestures and body language to convey meaning.”

Like spoken languages, sign language is not international and is not derived from the spoken language of a country. For example, the UK, Ireland and the US all have entirely separate sign languages, despite speaking the language of English in common.

In 1988, the European Parliament passed a resolution on sign languages, proposing that every member state should recognise its own national sign language as the official language of deaf people in that country, which on 18 March 2003 the British Government did. In 2009, the UK Government went on to ratify the UN convention on the rights of persons with disabilities, which states that Governments must uphold rights by

“Accepting and facilitating the use of sign languages...in official interactions…and…Recognising and promoting the use of sign languages.”

BSL, however, still does not have any legal or protected language status, despite many deaf organisations campaigning for that since the early 1980s. Back in 2014, the British Deaf Association published a detailed discussion paper and highlighted the

“policy apathy about the shocking levels of linguistic exclusion we face as individuals and as a community”,

and,

“the shocking extent to which Deaf people are denied their civil rights.”

The paper itself highlighted the good practice that takes place in Finland, New Zealand, Austria and Hungary and set out why our Equality Act 2010 was not working as intended for deaf people—an issue to which I will return. Of course, since that paper was published, the British Sign Language (Scotland) Act 2015 has been passed, requiring the Scottish Government to create a BSL national plan for Scotland to set out their strategy for promoting BSL. That was produced in 2017. The Act also required all other listed bodies such as local authorities to establish their own BSL plans.

I look forward to hearing from the Minister whether her Government have made, or intend to make, any progress towards providing BSL with legal status on a UK-wide level. I recognise, however, that she might have difficulty in doing so, given that it remains somewhat unclear just who has overarching responsibility for promoting and protecting BSL within and across Government.

[John Howell (Henley) (Con)]

The hon. Lady mentioned the European Union, but another organisation in Europe, the Council of Europe, covers 47 countries. It has already looked at the issue and suggested that countries need to emphasise their BSL equivalents and undertake training to ensure that that is available. Has she seen that report, and does she think it is something that we might like to support?

[Catherine McKinnell]

It is an important report, obviously, but I am interested to hear whether the Government have considered it, what their response is and how that would fit with their overall requirements to better meet our obligations on such issues in this country.

In preparing for this afternoon’s debate, I of course looked back to the 30 November 2017 debate on deafness and hearing loss secured by my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick), who is present in the Chamber today. In that debate, the Parliamentary Under-Secretary of State for Health commented:

“It is not entirely clear to me which Department would lead on legal recognition of British Sign Language, which is the problem that so many people have referred to today. I am sympathetic to the calls for strengthening the role of British Sign Language. We want to see as many people trained and providing support as possible. At this time, Her Majesty’s Government are not yet convinced that the way to achieve that is through legislation.”—[Official Report, 30 November 2017; Vol. 632, c. 236WH.]

I therefore look forward to hearing from the Minister whether that position has changed. In the light of some of the issues to which I will refer, I hope it has.

For some time I have been working with a number of local deaf organisations on the significant challenges faced by far too many deaf people in accessing services, information and support. Those organisations include the Newcastle-based charity Becoming Visible, but also Deaflink North East, in particular since I attended a hustings that it organised for the local deaf community ahead of the 2015 general election. At the time, the overwhelming sense of frustration felt by many deaf people about continually having to demand, to challenge, or to fight to access even basic services that most of us take for granted was palpable.

Since then, I have worked to do what I can to make myself accessible to deaf people in Newcastle North as their Member of Parliament, including by launching a BSL section on my website with the support of Deaflink North East, to whom I am extremely grateful. The page includes a subtitled video of a person using BSL to explain, in accessible language, my role as a Member of Parliament, including the types of issues I can help constituents with. Perhaps most importantly, it also makes it clear that should any BSL user from Newcastle North wish to attend one of my surgeries, Parliament can fund a BSL interpreter to facilitate that. In response, the manager of Deaflink, Heidi Jobling, commented:

“We are really pleased that Catherine has taken this positive step towards including the BSL communities. It is so difficult for BSL users to access any type of service and to have our local MP leading the way sends out a clear message, not only to the BSL community but to other providers and organisations, that being accessible is important.”

But this is not about ticking a box and moving on. I hope it is a clear demonstration of my determination to improve accessibility for deaf people wherever I can, including through this debate.

To mark Deaf Awareness Week, the chief executive of the National Deaf Children’s Society wrote a blog entitled “Unsure How to Communicate With Deaf People? Here’s Some Advice”. It revealed the findings of her charity’s recent survey that more than half of British adults do not feel confident talking to deaf people, while one in five has been nervous when speaking to a deaf person, simply because they do not know what to do. The piece opened with a really powerful description:

“Imagine if you were with a group of friends and one of them said something funny, which you didn’t quite catch. Now imagine, while everyone else is laughing, you ask them to repeat it, only to be met with the response ‘Oh, it doesn’t matter.’ What if this happened to you again and again, in lots of different situations? For many deaf people, this is far from hypothetical; it’s real life.”

That scenario is bad enough in social situations, but the constant inability to communicate or be communicated with in one’s own language—and therefore access timely, appropriate and important healthcare, support or information—is particularly serious, as it can be a matter of life or death.

My constituent Ellen O’Sullivan, who is deaf, recently contacted me about the tragic death of a young man from Essex, who ended his life last month. It is reported that, having been assessed as having severe mental health problems and requiring urgent attention, the man was referred to mainstream counselling with the provision of a BSL interpreter, instead of the specialist deaf-focused therapy requested by his GP. Following his death, the specialist counselling service Deaf4Deaf set up a crowdfunding page to establish the Daniel MJ Webster Deaf Mental Health fund, with a target of raising £50,000 to provide six emergency counselling sessions to 278 deaf people with severe mental ill health in the parts of England where the NHS does not fund that. Such support is vital because, as the crowdfunding page highlights:

“The NHS regions who do not offer BSL counsellors use an interpreter with a counsellor. In general hearing counsellors do not understand the specific issues faced by Deaf people.

Interpreted counselling involves a counsellor and interpreter in the room with the Deaf person as they talk about deeply personal issues. Many Deaf people give up after a few sessions because communication becomes difficult.

There is an increasing number of Deaf people asking for NHS funded Deaf focused BSL counselling, they report suicidal thoughts. Many of these people have tried interpreted counselling which was not suitable for them.”

The establishment of this fund in Daniel MJ Webster’s memory is extremely powerful, and it is highly relevant that I raise his case during Mental Health Awareness Week. Does the Minister seriously think it is acceptable that the crowdfunding campaign should have to take place?

On being informed that I had secured this debate, my constituent Ellen O’Sullivan took the trouble to share her wider concerns about access to NHS services for BSL users and to canvass the views of many of her deaf friends. I will share some of their experiences. One commented:

“I am trying to be independent but I am unable to do that because to make an appointment you have to ring up, which obviously I can’t do because I am deaf. So, I have to rely on my mother to ring them or make or cancel the appointment. The doctors do have a website to book an appointment online, but when I need to see a doctor as an emergency on the day, I can’t book an appointment online because the appointments are not available to book until after a week or two.

I do understand that the NHS are trying to save money but as a deaf person I think it is important that doctors and hospitals book an interpreter to be with a patient the whole time while they’re at hospital or the doctors, in case something happens. For example, my partner who is also deaf, had a nose operation. It was a day operation and the hospital only booked an interpreter for 2 hours, but he also needs an interpreter when he wakes up, so he knows what is happening.”

Another explained:

“I am sick of going to the doctor to make an appointment and when they send letters regarding the appointment and the dates I can’t make due to work, I have to get my Mam to ring them and rearrange the time or cancel. I would rather email or text because I hate bothering her to ring up all the time.”

Another of Ellen’s friends commented:

“I don’t want to ask my Mam to make an appointment when I’m 30, I would like to be independent now. We need an app for quick easy access to book GP appointments.”

Another stated:

“I was in hospital for an operation and when I woke up the nurse came up to me and was talking to me, so I told her I was deaf but she was still talking to me! The staff gave me paper and pencil after my operation but I couldn’t write because I was hooked up to drips. I need an interpreter with me all the time!”

Other concerns raised by Ellen and her friends include the use of BSL interpreters who are not fully qualified, and the constant stress and anxiety that deaf people feel before and during medical appointments because they do not know whether their communication needs will be met.

[John Howell]

The hon. Lady is making an excellent case. I wonder whether she is aware of a number of NHS trusts that have tried to get around the problem, initially at least, by having television screens showing a BSL interpreter who helps the patient to get their appointment. That is a very good start, but it illustrates her point that it is only the start, because the person needs to be there throughout the whole process. Is the hon. Lady aware of that experiment?

[Catherine McKinnell]

The hon. Gentleman raises a point that I was about to make. I said that an app should be available for contacting a doctor’s surgery—I think most doctor’s surgeries would agree. We need to explore the use of technology to make accessing NHS services a reality for deaf people—texts, apps, Skype or FaceTime—and urgently to invest much more in making sure that where there are technological solutions, we harness them to their greatest effect as soon as possible. All NHS staff, whether administrative or medical, need to understand deaf people’s communication needs and NHS buildings must be accessible, with clear plain English signage. Those issues are reflected in the experience of many deaf people in my region.

The Newcastle-based charity Deaflink North East shared the recent outcomes of work that it is undertaking on behalf of Northumbria Healthcare NHS Foundation Trust to identify the issues and barriers that BSL users face, which Deaflink states are common right across the country. They include deaf people regularly being told to telephone to book a BSL interpreter; continually having to remind GPs and hospitals that they need a BSL interpreter and it not being clear whose responsibility it is to book one, despite their communication needs repeatedly being flagged; appointments not being long enough for BSL interpretation; interpreters not having appointments and people being sent home after waiting for a very long time; being asked to sign forms without fully understanding what they mean; being sent large amounts of complex pre and post-operation information, with only telephone numbers provided if they require further advice; staff being generally unaware about deaf people’s communication needs, such as that they need to look up when speaking or should not shout out a deaf person’s name when they are waiting in reception; and deaf people simply not understanding what treatment they are receiving and having no means of finding out, and the likelihood that they are, therefore, being treated without informed consent.

Those communication issues clearly become more frightening in an emergency situation. Last year, deaf blogger Liam O’Dell highlighted concerning findings from freedom of information requests he had made to hospital and ambulance trusts about the BSL interpretation services they provide—or, rather, often do not provide. His article opened:

“Distressed, in pain, in an unfamiliar environment with no means to communicate.

It’s a feeling of isolation one would usually associate with your typical horror movie, but if the right provisions aren’t in place, it can be a real-life nightmare for the 50,000 deaf people in the UK that use British Sign Language as their first language.”

Of course, this issue is by no means restricted to NHS services. The Minister may be aware that, in September last year, I wrote to the Minister for Disabled People after being contacted by Deaflink, which was due to lose its core funding from the Newcastle Gateshead clinical commissioning group in what appears to have been a cost-saving measure. I wrote to the Minister for Disabled People because I felt the wide-ranging concerns Deaflink had raised should be addressed by the Department with overall responsibility for cross-Government disability issues: the Department for Work and Pensions. However, my letter was transferred to the Department of Health and Social Care and then seemingly got lost. I received a response from the Minister in January. That again begs the question of which Department has specific responsibility for promoting BSL and standing up for its users. If the Minister is unable to provide an answer today, I suggest that the Government need urgently to resolve that.

Deaflink’s manager, Heidi Jobling, told me that after more than a decade of working with BSL communities in the north-east, she has seen

“the statutory services available to BSL users getting progressively worse. There are always exceptions, but it is widely acknowledged that, when leaving school, the average reading age of a BSL user is 8-9 years old. The majority of the hearing world do not understand that many BSL users do not feel comfortable or able to communicate in written English. Lip reading is difficult, exhausting and at best about 50% accurate. Yet, these are the fall back communication methods when no interpreter is present.”

She went on to ask how BSL users are supposed to access public health information about things such as joining a gym, stopping smoking, joining a weight loss group, safe amounts of alcohol or preventing diabetes—or, indeed, about how BSL users can access the benefits system, which now is almost entirely online. I dealt with a case in which a leading high street optician did not provide or fund a BSL interpreter for a deaf constituent, believing that offering a double-length appointment and speaking more slowly would be sufficient.

The letter I received from Deaflink highlighted serious concerns about the impact of almost a decade of austerity on BSL users. For example, the adult services sensory team has closed, all BSL-using social workers have been removed, and support to the majority of BSL users has been withdrawn following punitive local authority funding cuts. Heidi Jobling concluded:

“I am writing because I am concerned that, in times of austerity, the needs of the BSL community are the easiest to overlook.”

I find that statement deeply depressing.

I am, of course, acutely aware that the enormous challenges BSL users face in accessing what most people would consider to be everyday services are not restricted to the public sector. Indeed, the Treasury Committee, of which I am a member, highlighted only this week the difficulties that far too many people with accessibility requirements face in engaging with financial institutions and services. That certainly includes BSL users. One of the recommendations we made in our report was that the Equality and Human Rights Commission needs more resources to enforce the Equality Act 2010.

That brings me to my final concern. In response to the concerns I raised on behalf of Deaflink, the Minister emphasised:

“NHS organisations should provide interpretation services to all patients requiring them, including users of BSL Providing communication support to service users is driven by the requirement to comply with relevant legislation, including the Equality Act 2010 and the Human Rights Act 1998, and supporting guidance. This makes it imperative for organisations to provide language and communications support to ensure that patients are able to communicate effectively and appropriately with clinicians and other health service professionals.”

She went on to highlight that

“non-compliant organisations risk complaints and legal challenges, as well as patient safety and other implications.”

Given all the concerns I have highlighted, does the Minister really think the current legislation is sufficient to ensure that BSL users have their communication needs met across the NHS, or will she consider introducing a BSL Act along the lines of the one in Scotland? Given the difficulties that BSL users have in accessing many NHS services in the first place, just how easy does she think it would be for them to make a complaint about those services or to find out anything about the complaints process?

The fact that Deaflink is undertaking the work I mentioned with the Northumbria Healthcare NHS Trust and, to a lesser extent, the Newcastle upon Tyne Hospitals NHS Trust is really positive. Is the Minister confident that all NHS services are taking steps to conduct and then act on similar work, or will she ask NHS England to properly investigate the level of deaf awareness in those services and their accessibility for BSL users? I make a gentle plea to her not to make reference to induction loops or technology for hearing loss. Although those things are extremely important, this debate is about accessibility to NHS services for BSL users specifically.

In conclusion, does the Minister really think it is appropriate to expect adult BSL users to have continually to rely on friends and family—often their parents—to access healthcare and treatment or to discuss private medical information? Is it really acceptable for BSL users to have continually to challenge, demand and fight for access to NHS services that most of us take for granted, or to face delays to their treatment because their communication needs simply have not been recognised and met? That is not a situation that any of us would tolerate, so why on earth should deaf people have to do so in 2019, almost a decade after the Equality Act became law?

Government Mandate for the NHS

John Howell Excerpts

Thursday 25th April 2019 Commons Chamber

[Stephen Hammond]

The hon. Lady will know that the Government have committed £33.9 billion up to 2023-24, and the first element of that has arrived this year. There will be, as I said earlier, publication of a Green Paper on social care and, combined with the comprehensive spending review, that will ensure that the Government will provide for the social care funding that is necessary.

[John Howell (Henley) (Con)]

Will the Minister recognise that the commitment under the long-term plan to ambulatory care, which is supported by the Royal College of Physicians, is helping patients receive the best form of care service in their own homes?

[Stephen Hammond]

My hon. Friend is right. At the heart of the long-term plan is the emphasis on primary care and prevention. Providing care for people in their own homes undoubtedly achieves better outcomes for patients and he is right to welcome it.

Mental Health Services: Leeds

John Howell Excerpts

Tuesday 23rd April 2019 Westminster Hall

[Fabian Hamilton]

Yes. I thank the hon. Lady for her point. That is one of the problems: it is a maze. If people are told to refer themselves through a website, which can then refer them to another organisation that is supposed to allow them to make an appointment, and they then leave a message on voicemail and it is never responded to, that is shocking in itself. The example my hon. Friend the Member for Leeds North West (Alex Sobel) gave of the ambulance and the waiting in A&E, and then the lack of credible resources and assistance from the mental health services, highlights the scale of the problem.

After the date for this debate was published, I was contacted by Healthwatch England, which told me that Healthwatch Leeds was about to publish a report on mental health in Leeds and that it would be happy for me to use some of the report’s data and conclusions in the debate. Unfortunately, owing to unforeseen circumstances, the publication of the report has been delayed, but to show that Andy Downey’s is not an isolated case, here is a quote from one of the 697 people in Leeds—I do not know his or her name—who gave evidence for the report during the first three months of 2019:

“I do not know what is wrong with the entire Trust. I had waited since February for a referral to the CMHT”—

the community mental health team—

“I was seen in August. I was discharged, told to talk to IAPT. IAPT has its own waiting lists. As a result of not being able to prove I accepted, I lost everything. I DID NOT REFUSE TREATMENT!! NONE WAS OFFERED!! Today I phoned the crisis team in tears, and they said ‘contact your GP in the morning’. I have no job, I have no money, I went through over 6 months waiting for a simple appointment. I am struggling, and the best the crisis team can do is say ‘contact your GP’. My GP referred me to the CMHT because I was suicidal. Can’t believe the crisis team said ‘tell your GP’. I have been telling my GP, who couldn’t handle it, so he sought help. Today I found out I lost my job, and I will soon be homeless, because my home is provided by my employer. I was suicidal and depressed before today... can’t the crisis team show some empathy and realise some things are a tipping point?”

[John Howell (Henley) (Con)]

I am not a Leeds Member, but what the hon. Gentleman has highlighted in that moving passage is the need for GP training in this area, right across the country. Is it not time that we got that training right?

[Fabian Hamilton]

I thank the hon. Gentleman for that important intervention. He is absolutely right. It is clear from what I, and all of us, have seen that all GPs need far better training in how to deal with mental health issues.

Infant First Aid Training for Parents

John Howell Excerpts

Wednesday 3rd April 2019 Westminster Hall

[Sarah Newton]

I very much welcome my hon. Friend’s intervention as a young mum. Rowena had her first aid training through the Red Cross, which can provide my hon. Friend with specialist training for babies and children. Administering first aid to a young child is quite different from administering it to an older person. I commend my hon. Friend, and I hope that, as a result of our work today, many more parents will do the same.

[John Howell (Henley) (Con)]

This is an excellent debate. The scale of the task we face is quite enormous. A survey published in The Daily Telegraph not so long ago showed that only 24% of parents thought they had the skills to be able to stop their child choking. That is a very small percentage. What can we do to encourage a vast number of parents to get the training?

[Sarah Newton]

My hon. Friend makes an extremely good point. I am blessed to say that I have three children, who are in their twenties; I remember how many times I was worried about them and went to my GP or to A&E unnecessarily. I wish I had done the training, because I would have felt much more confident as a parent—I certainly would have saved some valuable time in A&E and with doctors.

I was prompted to secure this debate to continue the work I have done to prevent avoidable deaths from sepsis. We have made huge progress, and the Government have done excellent work with the UK Sepsis Trust to make sure that parents are aware of the symptoms of sepsis, as are our healthcare professionals, from paramedics right the way through to people in hospitals, and professionals in nursery schools and primary schools. They are all having sepsis training. That is important, and now is the time to build on that and to empower parents to spot the signs of not only sepsis but all other serious illnesses.

--- Later in debate ---

[Julie Cooper (Burnley) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Hollobone. I congratulate the hon. Member for Truro and Falmouth (Sarah Newton) on securing this important debate. The subject has had a lot of attention in the news recently, but not much attention in this place. Having listened to the speeches and talked to colleagues across the House, I do not think there will be much disagreement here today. The fact that there are not many Members here says more about the subject than it does about any other business in this House, important as it is: any Member seeing the title of this debate might say, “It’s a no-brainer. What is there to talk about? Of course it is something we support.” It is important to put these things on the record.

Members have talked about their personal experiences as parents and grandparents—I am sure we all want to congratulate the hon. Member for Moray (Douglas Ross) on the new addition to his family. People have spoken movingly about their own children and grandchildren. As a parent and a grandparent—I am going to be a grandparent again next week—I am reminded of how important the subject is, and we ought to give proper consideration to it. This debate gives us that opportunity, so I am grateful to the hon. Lady for securing it.

[John Howell]

As the hon. Lady rightly says, a lot of people have spoken from personal experience, but we as MPs have a role far beyond that—we are champions in our own constituencies. Does she not think that we should take the lessons learned and go out and make these points very forcefully in our constituencies?

[Julie Cooper]

I am grateful to the hon. Gentleman for that important intervention. I shall certainly speak with a loud voice about the subject in my constituency, and I encourage all Members to do the same.

The other point made by the hon. Member for Moray was that access is not easy. In preparation for this debate I checked up on access to training courses for my constituents and found that, even though I represent an urban community, it involves a 60-mile drive or a long train journey on a slow, rickety train line. That presents a massive barrier to my constituents accessing such training. I totally take the point that the hon. Gentleman makes, and I agree with him entirely.

The safety of our children is and always should be paramount, and it is therefore important that, in the event of an obvious health emergency, parents have at least a basic knowledge of first aid so that they can take action before professional help arrives—actions that might save the child’s life. The hon. Member for Truro and Falmouth made a strong point about how it is important that parents are trained to recognise the symptoms of what can be serious diseases, such as sepsis and meningitis. It would be useful if parents were equipped to recognise the symptoms before they decide whether to call 999 or take their child to hospital, because knowing how to spot the symptoms really does save lives.

First aid, as the term suggests, is the first medical attention that a person receives after an accident or during a medical emergency. Despite what many people have been led to believe, first aid does not have to be delivered by medical professionals—we have established that. A person’s chances of surviving a medical emergency are increased dramatically if a member of the community can respond with first aid immediately. What happens in the crucial minutes after someone dials 999 or the NHS’s 111 and before professional help arrives can be the difference between life and death. The British Red Cross reported that close to a quarter of infant deaths could have been prevented had there been a qualified first aider on hand, and who better to be trained than the parent?

Services for People with Autism

John Howell Excerpts

Thursday 21st March 2019 Commons Chamber

[John Howell (Henley) (Con)]

I, too, wish to start by paying tribute to my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan), and I am glad that all our thoughts are with her.

In my constituency, I am very fortunate in having numerous institutions, be they charitable or, as it were, full-time, and individuals who do a lot to take things forward, examine them and do the research on autism. I wish to make two mentions to start with. First, it was through this issue that I was introduced to Dame Stephanie Shirley, whose work in this area is phenomenal. She has spent a huge amount of her own money taking forward research in this area, and she is a beacon when it comes to providing a focus on dealing with autism and showing us what to do. Secondly, I would like to mention a charity called Music for Autism, which was set up with the Orchestra of St John’s. It uses music to influence the lives of those with autism. Those who have seen it in operation will know that it is a fantastic experience to see how members of the orchestra lap up the opportunity to work with those with autism and help enrich their lives. That is a great achievement.

I wish to concentrate on three areas. First, I want to follow the hon. Member for Cardiff West (Kevin Brennan) in commenting on the treatment of those with autism in the justice system. That needs to be concentrated on in three areas in particular: the police; the courts; and among prison staff, if it eventually comes to that. Only two things need to be done to take this issue forward in a big way. First, we need to identify those with autism at a very early stage, because as the hon. Gentleman said, that helps to make sure that we do not end up in a whole lot of disputes at a later stage. I am aware that the courts have put a lot of effort into making sure that they are autism-friendly for people appearing before them. I am also aware of a number of prisons that support people with autism; I think there is a pilot scheme, and I hope it will be rolled out across the prison system and that we can learn the lessons from it.

The second issue I wish to mention is education. Several Members have already mentioned education, but I wish to cover a particular aspect: the involvement of people with autism in designing training for teachers. Several Members have hinted at that point, but I do not think anyone has tackled it as boldly as I am going to. The involvement of people with autism in the training of teachers is absolutely essential. They can provide help with training and influence how it is devised in many ways, all of which will lead to more choice and to our paying special attention to the needs of those with autism.

Finally, I wish to comment on autism and jobs. Last year, I was appointed a special envoy for an autistic charity called SPACE—I am never good with acronyms, but I think it stands for Supporting People with Autism into Continued Employment. I became the envoy for that charity to promote the idea of Members taking on staff with autism in their offices. As a way of demonstrating that, I enthusiastically took on a young man from Hornchurch who has autism. When it came to saying goodbye to him at the end of his period with me, I really regretted that he was going. He had been an outstanding worker and made an outstanding contribution to my office. It had been a great experience, not only for him but especially for me and my staff. If we can encourage more of that, we will have a much better way forward for those with autism.

Leaving the EU: Health and Social Care

John Howell Excerpts

Tuesday 19th March 2019 Westminster Hall

[John Howell (Henley) (Con)]

It is a pleasure to serve under your chairmanship, Mr Bone, and to follow the hon. Member for Argyll and Bute (Brendan O'Hara). Above all, this debate allows a reasonable discussion of the issue, which I hope we can have, but I was struck by the similarity between it and last night’s debate in the main Chamber. Like the hon. Gentleman, I am aware of constituents who have expressed their great problems in getting drugs for two conditions, in particular: insulin for diabetes and the drugs required for cystic fibrosis. Cystic fibrosis is a particularly horrible disease that requires a continuous supply of drugs, so I can understand the concerns.

Throughout all the discussions on this matter, I have been conscious of the lack of objectivity from anyone, including the medical profession. The hon. Gentleman seems to think that those in the profession can stand aside and take an independent line, but I do not believe that is true or that what they say is necessarily helpful. Allow me to pick up where the Minister left off: the guidance published by the Government for pharmacists and members of the public is not to stockpile medicines. As part of the Brexit contingency measures, the Department of Health and Social Care has asked drug manufacturers to ensure they have a six-week buffer stock, on top of the three months already in place, but the public do not need to stockpile medicines.

[Mr Gregory Campbell]

During a recent episode of “Question Time”, the new presenter Fiona Bruce asked the audience how many of them were stockpiling. Almost nobody put their hand up, much to the embarrassment of the BBC.

[John Howell]

The hon. Gentleman has much more leisure time than me, as he can still watch the BBC. I cannot remember when I last watched it, but I am pleased to join him in condemning its attitude. He makes a strong point. During the Brexit campaign, the health sector was dominated by the promise on the side of the famous bus, but equally, the remain campaign has lied through its teeth in saying many things. I have no real confidence that, if we were to have a second referendum, we would at any stage be able to have a debate free of exaggeration.

A constituent contacted me to say that he had been to a local hospital and was astonished to see that as a result of Brexit—although it has not happened yet—the ward was closing and had lost a large number of staff. I decided I would not let that go, but would find out the facts. I spoke to the matron who ran the ward in question. She said to me, “That is absolute rubbish. We have a full ward; this is a normal cycle of people’s leave and it has nothing at all to do with Brexit.” If we make Brexit arguments we need to ensure we have a rational and objective discussion, which so far we have not been able to have.

[Brendan O'Hara]

To have a rational and objective discussion, we have to rely on experts and take evidence from the people in the field. The contributors are objective: Macmillan Cancer Support, the British Medical Association, Cancer Research UK and CLIC Sargent have come to us to say there is a major problem. I presume the hon. Gentleman would not say that they are partisan players.

--- Later in debate ---

[John Howell]

I am not sure that I agree with the hon. Gentleman. As politicians, we have the principal duty to explore the situation. There will be times when we need expert opinions, but I am complaining about the debate and discussion in this country where people on both sides use the issue as a football and produce exaggerated claims.

I have a great deal of sympathy regarding mental health, an issue on which I have done an enormous amount of campaigning. Outside the EU, there is another organisation with responsibility for mental health, the Council of Europe, on which I serve as a member of the Parliamentary Assembly. The Council of Europe has an expert committee on mental health, which is nothing to do with the EU. That means that if we leave the EU, there is a body of evidence and recommendations already in place to take forward mental health issues. That expert committee has produced a reference tool to determine the essential basket of potential rights that an individual should have, to consider whether the human rights of a patient suffering from mental disorders can be maintained with a great deal of dignity. That is an important element that we seem to ignore; we pretend it does not exist, yet many of us spend a huge amount of time at the Council of Europe trying to push forward those sorts of rights, not to take the place of the EU—it works the other way around—but to provide a safety net for people who are suffering from mental disorders.

I want to end on the issue of care. In Henley, the Government have spent about £12 million rebuilding a new hospital that is a model of how to integrate care and medical provision. The hospital was built without any beds; the beds are in the care home at the side of it. That has changed the way that doctors look at the provision of care. They do not immediately think that they should simply send patients to a bed when they can be treated better at home. I have taken various Ministers along to look at that hospital. I do not think it will be affected by Brexit in the slightest. The model set up there is one we can all take as a better way for the system to work in future. I extend an invitation to the Minister to come and see that hospital and how it operates. I hope he will enjoy the experience and see the lack of impact that Brexit will have on the provision of service.

Health and Care Professions Council: Registration Fees

John Howell Excerpts

Thursday 14th March 2019 Westminster Hall

[Mr Cunningham]

In considering that, we have to remember that a lot of those workers’ salaries—for want of a better term—have in some instances been frozen since 2010, while in some instances they may have increased by 1% or 2%. With inflation at about 2% over that period, that is roughly an 18% cut in wages. Add the increased fee, and those workers are carrying a heavy burden that they should not have to carry. Adequate funding should be provided, rather than finding it by using hidden taxation methods. We all know that nurses and so forth in some of our hospitals have to pay car park charges. Given all those hidden costs, these workers are quite frankly bearing the brunt of the recession.

[John Howell (Henley) (Con)]

A lot of these organisations have always said that they want to keep their independence and do not want to be funded by other sources; they are pretty keen on making sure that that continues. Is the real issue not the amount of regulation that they have to deal with? That must be one reason why the funding level has increased.

[Mr Cunningham]

Organisations always argue that they want to be self-sufficient, but that should not come at the expense of the people whom they actually regulate. I am not an expert on the regulations that some of these bodies govern, but we should be very careful when thinking about changing regulations or reducing their amount. We would need to test that.

Altogether, the HCPC has not given a strong reason for this huge increase, leaving affected workers frustrated and angry. In addition, the Government’s response to the fee change has been very disappointing: in answer to written questions, they have just repeated the HCPC’s weak defence of the fee rise. Ministers have argued that the registration fees remain the lowest of any health regulator, but that does not change the fact that the rise is disproportionate and unfair. The Government should be concerned over the threats to staff levels in the affected professions, but Ministers say they have made no assessment of the impact on staffing of this rise. That is a complete dereliction of duty, with staff openly talking of leaving due to the rise.

It is an irresponsible move by the Government to hide behind the HCPC’s independence. They must take steps to prevent fee rises from being the norm for the HCPC, and for all regulators, and help to build bridges between healthcare professionals and the HCPC, as trust is breaking down. HCPC members are understandably angry, believing that it is exploiting a stranglehold over their jobs. The rise amounts to nothing less than a tax on practising, and it has had little scrutiny or debate. I would like the HCPC to reverse the decision to increase registration fees by 18%. The Government and the HCPC must change the way fees are decided on, to prevent such a huge change happening in the future. The HCPC must operate in a fairer and more transparent way, and the Government must play a role in ensuring that that happens. It is time that the Government and the HCPC stopped taking advantage of those who take care of us all.

In response to the rise in fees, Unison conducted a survey of affected members and found that 99% of respondents did not back it. Importantly, it found that 76% did not see the current £90 fee as good value for money. Members feel that the HCPC offers no real benefit except for allowing them to practise. They are also critical of the justification given by the HCPC for the fee rise.

First, it must be pointed out that the 18% rise completely outstrips inflation. If the HCPC was genuinely concerned to cover inflation, it could implement smaller, year-on-year rises. I doubt whether the staff could afford those, frankly, but it is one way to look at it. Secondly, it is unfair for members of other professions to cover the costs of transferring social workers to a new regulator. The HCPC faces upheaval because of the change, but it is wrong for other professionals to pay the price.

Thirdly, the case for needing more funding after the transfer of social worker regulation is dubious. Social workers make up a quarter of members, which is a substantial number of registration fees. We all know what a difficult job they do. Often they are put in a situation where they cannot win, and they bear the brunt of some of the ills of society, to say the least of it. However, they also account for more than half of all fitness to practise cases. That is the HCPC’s largest area of expenditure. Despite a loss of income, the HCPC will face a sharper fall in costs at the same time. That fundamentally undermines the case for an 18% rise, and proves that it is unnecessary.

Unison also highlighted several changes that the HCPC should implement to reduce spending. First, it must take steps to make its complaints process more efficient. The Professional Standards Authority for Health and Social Care found in 2018 that the HCPC’s investigation committee refers cases too readily to the fitness to practise panel and that more than 20% of complaints are found at final hearings to be “not well founded”. Overall, members are funding a system that handles complaints against 0.64% of registrants and sanctions just 0.09%. No wonder so many members are left feeling that they gain nothing from their registration.

The fee rise comes on top of many years of wage freezes and below-inflation wage rises. Although £106 might not sound much to the Government or to some higher-earners in the health sector, the rise will be a real hit to part-time workers and those on lower wages. Professionals are left doubting their trust in the HCPC after being ignored in the consultation. The HCPC is facing growing unrest and resentment among its members. Many are now moving to non-regulated posts, and part-time working will become a lot less attractive, inevitably causing a fall in the number of workers in the sector.

Eurotunnel: Payment

John Howell Excerpts

Monday 4th March 2019 Commons Chamber

[Mr Speaker]

It is worth pointing out that that Hancock was deliberately funny.

[John Howell (Henley) (Con)]

The Secretary of State has talked about medicines, but there are also prescribed foods—for example, the gluten-free food on which some people depend. What will the situation be for those foods?

[Matt Hancock]

Of course that matters enormously, too. Although medicines are the category 1 prioritised goods that will be using the extra procured capacity safeguarded by this settlement, there are other measures being undertaken by the Department for Environment, Food and Rural Affairs to protect the supply of foods.

Eating Disorders Awareness Week

John Howell Excerpts

Wednesday 27th February 2019 Westminster Hall

[Kirstene Hair (Angus) (Con)]

I beg to move,

That this House has considered Eating Disorders Awareness week.

It is a pleasure to serve under your chairmanship, Mr Bailey, for this very important debate. As we are in the middle of Eating Disorders Awareness Week, this is a timely day on which to remind ourselves of the good work that has been achieved in the past year, but also to look forward to where we want to be by this time next year.

I want to take this opportunity to thank Beat—the Eating Disorders Association—and the many other charities that have been in touch with me ahead of the debate for their sheer hard work and determination to keep this issue at the forefront of the Government agenda. I see many of you in the Public Gallery and want to say thank you for all that you do.

There is always great cross-party support in debates on eating disorders. I have been in this place for only 18 months, but it is the debates in which we are all travelling in the same direction that are so powerful, because we show our constituents that we can agree, and when we do, this place is much stronger and improves lives much more quickly.

As we know, eating disorders affect more than 1.25 million people throughout the United Kingdom, but that is a conservative figure, because many sufferers have not yet been diagnosed or identified. It is for that reason that this debate is opportune. We are all here today for those in the Gallery, for those who are fighting for this cause, for those who are currently fighting this debilitating disease, for those who have fought and come through it and for those who are currently living their daily lives as normal but may suffer at some point in the future. My colleagues and I will always fight your corner, and I am delighted to see many hon. Members here today to support the debate.

I wish to begin with the topic of stigma, which is the focus of the Eating Disorders Awareness Week campaign this year. As we know, eating disorders affect all age groups, genders and backgrounds. An eating disorder is not a diet gone wrong, a fad or a phase. It is not caused simply by a young female being exposed frequently to magazine images of skinny models or going on online platforms with similar material and deciding that they wish to look the same. It is an illness so deep rooted in the individual that it leads to devastating consequences for those who are suffering and for those around them.

[John Howell (Henley) (Con)]

My hon. Friend has talked about the effect on constituents. I have to say that, in this case, it was the effect on me, because a close member of my family suffered from an eating disorder. The help that was available was pretty close to negligible. Does my hon. Friend think that there is much more that we can do to increase the help available for people whose family members are in that sort of situation?

[Kirstene Hair]

My hon. Friend is absolutely right. The sufferer of course needs specialist support, but I will go on to speak about how I believe that we also desperately need to support families and, indeed, all those around them. This disease is so complex that it is often difficult to treat and, trapped in the disease, sufferers feel that there is simply no way out. Many believe that if the disease does not take them, they will take their own life, just to rid themselves of it. No matter how strong an individual is, an eating disorder is so all-consuming that once it has taken hold, some people believe that they will never live a normal life again, and many do not: the condition becomes chronic for about 20% of sufferers.

Normally, a series of events has encouraged the person’s mind to think differently about their body image. Perhaps they have decided that they are not good enough: one too many times, people or life events have created a narrative in their mind that they are inferior to those around them, or perhaps life is out of control in many aspects—nothing is going right. They compare themselves with others around them and see only the negatives in their own life and the positives in other lives, but they can take back control of one aspect of their life—control of what they eat. That may well start off as a diet, but not a diet that would be followed by a normal individual, which often fails. It soon becomes a focus and then a more extreme calorie-counting exercise that involves hiding food, burning off every calorie possible and social isolationism. Before they know it, the candle is burning at both ends. Before a sufferer has identified that they need help, the registered impact on their body is always perceived as being caused by some other reason. There is a voice inside a sufferer screaming that too much food is being consumed or not enough exercise is being done—praise when they miss a meal or hear the sound of a rumbling stomach. That voice inside a sufferer will not and cannot go away.

The loved ones around a sufferer see their daughter, son or friend fade into a shadow of their former self; they are helpless in every way. Parents struggle and are in emotional turmoil. They know that if their daughter falls and skins her knee, they can bathe it, put a plaster on it and make it better. If their son is upset because he is struggling at school, they can get him the support that he needs. We have solutions, and it is human nature to want to fix and help those we love. However, when it comes to eating disorders, everyone is helpless and feels hopeless. No one, unless they are trained, can provide support, other than the individual themselves. Many, if not all, sufferers who have managed to recover will say that it was the hardest journey that they have ever taken, but having spoken to some of Beat’s bravest ambassadors, we have seen at first hand the amazing, inspiring individuals they can become—but that is only if we help them.

As a result of the stigma attached to eating disorders, black, Asian and ethnic minority people, lesbian, gay, bisexual and transgender people and people from less affluent backgrounds are less likely to seek and get medical support. Research developed ahead of today’s debate showed that four in 10 people believe that eating disorders were more prevalent in white people than in other ethnicities, yet research shows that they are just as common or more common in the BAME community. Thirty per cent. thought eating disorders were more likely to affect the more affluent; in fact, they evolve at the same rate irrespective of education or income. Sixty per cent. of respondents believed that they affected only young people. That is having a significant impact on adults coming forward for support, and we see men and boys not being referred as soon as girls and females.

The statistics might not be surprising, but we have to challenge them continually. They are preventing certain groups in society from appealing for help, and creating an inequality in support. As a result, people are more ill by the time they are referred, making the recovery process much more difficult and sometimes impossible. We have seen fantastic work by members of the royal family as well as other notable figures, who have raised awareness of mental health disorders and who seek to break down the barriers to people speaking out, but also recognise that it is okay to talk and okay for someone to say that they need help.

When sufferers reach out for help, they have often been suffering for years. They need urgent specialist help immediately. The average cycle of relapse and recovery lasts six years, and there must be constant efforts to reduce that. To undo months and years of torture, specialists need time and resources to allow a patient to open up, to analyse, to find out the root causes, to get under the skin of the issues and to develop the mind to fundamentally change—a long-term approach, but a life-changing one.

Families, too, need guidance and support on how to deal with this troubling time. Many do not know where to go for support. This was one comment from the social media campaign that I ran before the debate:

“When anorexia arrives in a family it is like throwing a grenade into a home and watching it explode...caring for my daughter has impacted on the mental health of all those in my family.”

That is why I agree with my hon. Friend the Member for Henley (John Howell) that family-based therapy would provide a much-needed support base throughout the recovery process.

Without the investment of time, those patients will be back in our GP surgeries and hospitals time and again. We must look beyond weight. This is an issue of the mind, so whether it is a case of referral or recovery, it cannot be determined by the number on the scales. As a result of the digital campaign that I ran, I heard from many people up and down the country, and I thank them for coming forward with their stories. One person, who wished to remain anonymous, said that

“my granddaughter never got so thin but she died nearly 7 years ago at the age of 19 and I feel that if there had been some positive help she would have been alive today.”

She had been disregarded simply because her weight was not low enough. Recent research shows that GPs do not have adequate training for supporting individuals who have an eating disorder, with three in 10 sufferers not being referred when required.