Oral Answers to Questions

Bambos Charalambous Excerpts

Tuesday 19th June 2018 Commons Chamber

[Mr Hunt]

As I say, there are compelling arguments in favour of hypothecated taxes, but there are also strong reasons why we have to be cautious—namely, the fact that tax revenues go up and down, year on year, while the NHS needs stable funding. Important arguments and discussions need to happen between now and the Budget, when the Chancellor will make that decision.

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

T8. In the light of the additional funding announced by the Secretary of State yesterday, will he tell me how much additional funding will be provided for palliative care, which I highlighted in my Terminal Illness (Provision of Palliative Care and Support for Carers) Bill?

[Mr Hunt]

I thank the hon. Gentleman for his private Member’s Bill. Palliative care is something that we do well in the UK—thanks, a lot, to the brilliant hospice movement—but we can do a lot better. I know that this will be an important part of the NHS plan.

ADHD Diagnosis and Treatment

Bambos Charalambous Excerpts

Tuesday 15th May 2018 Westminster Hall

[Jo Platt]

I thank my hon. Friend, the vice-chair of the all-party parliamentary group for ADHD, for that intervention. He is absolutely right to mention that the lack of data causes a mismatch and a bit of a postcode lottery, which I will address later.

At a recent APPG meeting, we heard stories of people waiting years for a diagnosis—years battling without the support or guidance they need, falling behind in school, or struggling in their occupation. We heard stories like that of my constituent Mick, whose son has suffered enormously, falling into crime before he was diagnosed, which unfortunately is all too common. About 25% of male prisoners are thought to have ADHD.

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

I congratulate my hon. Friend on securing this important debate. She mentioned that about 25% of male prisoners are thought to have ADHD. Does she agree that early intervention and diagnosis of ADHD would not only reduce crime and save money, but improve the life chances of people with ADHD who fall into the criminal justice system?

[Jo Platt]

I completely agree. ADHD in the criminal justice system is an area that evidently needs a lot more investigation. The simple fact that an estimated 24% of the prison population are thought to have ADHD is a cause for concern.

--- Later in debate ---

[Jo Platt]

I completely agree. We have focused on young people in school settings, but that affects adults enormously.

I received a message from a constituent, Diane, who felt that she was different at school. Diane’s story speaks to the point, made by the hon. Member for West Dunbartonshire (Martin Docherty-Hughes), that adults are affected too. Diane went under the radar as she was high-functioning. She passed her GCSEs but failed at university as she felt that she could not concentrate. Diane developed mental health issues and has spent most of her life on anti-depressants, which she found did not work. She was unable to keep a job or a relationship, and in her 30s she tried to take her own life. It was only when her doctor advised her to be tested for ADHD and she was treated appropriately that her life turned around. That is not an uncommon story.

Since the debate was publicised on the House of Commons Facebook page last week, it has become clear that the scale of the diagnosis crisis is even greater than I could have imagined. The post was seen by 37,000 people and was engaged with by more than 1,000 people, shared right across the country. We saw stories of five-year waits and longer, of people forced to get a private diagnosis costing up to £1,000, and of children in school without the support they need. I urge the Minister to head to the Commons Facebook page and read some of the powerful stories.

After reading those stories, I could not help but wonder how in 2018 our healthcare provision can be so unresponsive to a condition that affects so much of the population. Earlier I quoted from a survey but did not state what the average waiting time is for a diagnosis across the country. That is because such information is not collected by the NHS or the Department of Health and Social Care. We have no idea what the average wait for diagnosis is, and therefore there are no target times.

From the unofficial data that is collected, it seems that we are likely encountering a vast postcode lottery that is unfairly dictating the speed of a diagnosis and the support available. Just take the comment of Sian on Facebook. Her son in Wigan has received excellent care, which she described as “life changing”. However, she teaches in a neighbouring constituency where children are waiting more than a year for diagnosis and encounter a far more confusing process. Without the diagnosis data, we have no way of either assessing the effectiveness of the current diagnosis process or identifying areas of good practice. That data must be collected before we can begin to assess our treatment strategies.

The third way we are letting people down is through the lack of an integrated support strategy for those with ADHD. By looking at each impact of ADHD in isolation—at just the medical impact, just the impact in educational settings, or just the behavioural impact and the social implications of the condition—we, as a society, are failing to offer the whole-system approach to ADHD, and to mental health more generally, that is needed. Tackling ADHD should be about transforming lives; not just responding to symptoms, but working to unlock the full potential of the incredibly creative minds that those with the condition possess.

The current approach to ADHD is not fit for purpose. Too many are falling through the net; too many are still waiting for a diagnosis after years on a waiting list; too many are without the right support; and too many are living undiagnosed with a condition that can have a severe impact on their daily life. I introduced today’s debate because of stories such as Becky’s, Sam’s, Hugh’s, Sarah’s, Claire’s, and the countless others who got in contact with me out of desperation, and who I know will be watching today.

What changes do we need? First, there needs to be more research. A recent Demos report highlighted that ADHD is under-researched, particularly its social and economic impacts. There also needs to be research into the difference made by early access to diagnosis and treatment to the long-term outcomes and costs of people with ADHD.

Secondly, the NHS and the Department of Health and Social Care need to collect data on waiting times. As we have seen, there is a vast postcode lottery across the country that determines the speed of diagnosis and the level of support. The system is grossly unfair and is reducing the life chances of people, based purely on where they live.

Thirdly, we need a streamlined and integrated approach to the support process we offer to children and adults with ADHD. As I have mentioned, those living with the condition are no less able but are often not suited to traditional methods of learning. We must implement a strategy that diagnoses an individual with ADHD speedily and then, crucially, signposts and tracks that individual through a system that promotes educational or employment opportunities suited to their skill set. More broadly, that means that as a society we must be unafraid to promote the untraditional or unconventional routes to success, to promote the creative industries, and to destroy the social stigma that too often forces individuals down the academic route.

In my own borough of Wigan, we have seen the beginnings of such an approach. The local clinical commissioning group has implemented a new joint mental health strategy that is designed to facilitate the seamless interaction of healthcare professionals with support services and education providers. The early signs are promising. Already we have seen the average local wait down from 15 weeks to six weeks, which will help numerous local young people to thrive. However, there is still a long way to go. The strategy addresses ADHD only in children and its implementation is too recent to see the long-term local impact. The local nature of the strategy also highlights yet again the importance of a national framework to achieve equality of provision across the country.

[Bambos Charalambous]

Is my hon. Friend aware of the Government’s mental health Green Paper? Does it contain anything of substance in relation to ADHD? Is there any strategy? If it does not, does she think it should?

[Jo Platt]

The Green Paper is a step in the right direction, but it does not go nearly far enough to confront the enormous scale of the challenges we face. In the case of ADHD, it is important to remember that the condition is neuro-developmental and not a mental health issue.

I have a final ask of the Minister: I invite her to a meeting of the APPG to listen to some of the experiences of people with the condition and to understand the barriers they face. ADHD is highly treatable and is, in many ways, a great asset, but only if it harnessed correctly. I hope that in this Mental Health Awareness Week we can commit to the beginning of a fundamental transformation in our approach to ADHD. No longer can people be waiting years, if not decades, for diagnosis; no longer can social stigma form a barrier against success; and no longer can we leave such enormous talent locked, restricted and hidden away in society. Now is the time to act. I hope that we will see from the Government the strategy and the leadership needed to support those with ADHD and break down the barriers to success that thousands across the country face today.

Helen and Douglas House Hospice

Bambos Charalambous Excerpts

Friday 11th May 2018 Commons Chamber

[Layla Moran]

I very much thank the hon. Gentleman for his intervention, and completely endorse what he says. The care that the hospice provides is world class and one of a kind. With the closure of Douglas House—I will get to this later—we will see hospices across the area having to deal with the extra need. Helen House is truly unique. I wish to pay tribute to some amazing fundraising efforts. Paul Townsend of Abingdon and Stuart Ryan of Farringdon are looking to raise £92,000 for Helen and Douglas House, and also for Sobell House in Oxford, with a tour of 92 football grounds in the 2018-19 football season—I suspect that there may also be an ulterior motive to their fundraising efforts, but I wish them well. Golfer Eddie Pepperell from Abingdon will wear a Helen and Douglas House cap for the televised BMW PGA championship in Wentworth later this month. He has also raised £7,500 via JustGiving.

Local businesses, including Stagecoach, radio station Jack FM—of which I am a huge fan—and Reed recruitment are just a few examples of the local businesses that have taken Helen and Douglas House into their hearts. The strength of feeling in the community across the whole of Oxfordshire is palpable.

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

Does the hon. Lady agree that it is a real shame that many hospices, such as the North London Hospice in my constituency, have to resort to fundraising to provide palliative care, which is so massively under-resourced with the NHS?

[Layla Moran]

I absolutely agree with the hon. Gentleman. There is a more systemic issue that I will get to later in my speech.

I now wish to tell the story of Sienna, who very much exemplifies one of the children and many of the families who we know use Helen and Douglas House. She is six years old and lives in Wootton with her mum, Kay, and dad, Andy. Her brother, Jamie, is 13 and sister, Ella, is 12. Sienna was born with Dravet syndrome, a rare and catastrophic form of epilepsy. Kay said:

“Being Mum for Sienna is like having a new-born baby for life. She cannot do anything for herself and therefore requires 24-hour care and monitoring. Her health is fragile and she is constantly dealing with illness and seizures, which are worse when she gets a temperature. Looking after a child like Sienna can consume much of my time, so having help is essential so that I can also be Mum to my other two children.”

She goes on to say:

“When Andy and I need a few days to spend time as a couple, or do something active with Jamie and Ella, Helen and Douglas House provides Sienna with a welcoming and safe place to go. Helen House is sensitive to the needs of our family and in that way it feels a lot like coming home; a safe haven. It makes me feel normal again and able to carry on.”

That very much exemplifies what hospices across the country do.

Let us get to the crux of the issue, however. The hospice is now facing the closure of Douglas House. Why is this happening? First, we have a situation where more babies are being born earlier and therefore many of them have more severe issues, and also medical advances mean that they are living longer. That is fantastic, but there is a knock-on effect in the wider system because demand is increasing. This is a third-sector organisation that, when it was first set up, never wanted or asked for money from the NHS but now finds itself providing services that the NHS itself should be providing, and facing a shortfall of £3.6 million. It brings in a huge amount—£52.3 million a year—but its expenditure is £55.9 million.

That is why we are now facing the closure of Douglas House, with a loss of care for 90 patients and 60 job losses. These are specialist nurse and medical teams that I fear would disappear from our ecosystem in Oxfordshire and have to end up going elsewhere. The hospice is also considering a review of its 37 excellent shops, which I often shop in. It currently receives zero funding from the local clinical commissioning group. That is the crux of the issue. Some beds are brought in by the NHS—roughly 12%—but zero per cent. of its funding comes from the CCG. I would argue that that is partly why the deficit has built up over time. In a way, the NHS is abdicating some of its responsibility towards an organisation that has been very strong at fundraising in the past but is now struggling and still being asked by the NHS to provide this service.

It is worth noting with cautious optimism that in more recent times—literally the past couple of weeks—the CCG has told the hospice that it might be able to give it some money, in the order of £100,000. However, hospices in nearby areas such as Buckinghamshire and even Birmingham that are doing similar things are being funded in the order of 30% to 37% rather than the 12% that Helen and Douglas House gets from the NHS.

I would like the Minister to address some of the bigger systemic issues. Of course, if there were a magic pot somewhere that she wanted to announce, that would be lovely, because we desperately need the money, and if we could in any way avoid the closure of Douglas House that would obviously be the best option. Will she explain why children’s hospices are funded less than adults’ hospices? That is the top ask. We need to ask ourselves whether that is fair. Together for Short Lives, the fantastic charity that does work in this area, is calling on the Government to grant £25 million a year to bring in funding parity. I think that is a fair ask given the amount of work that the hospice does. I should point out that the Scottish Government have already earmarked £30 million over the next five years to do just that. I know that nobody in this place ever wants to fall behind the Scots, so let us make sure that we get this right.

In 2016, the Government’s response to the review of choice in end-of-life care stated that to support high quality personalised care for children and young people, commissioners and providers of services must prioritise children’s palliative care in their strategic planning. If that is true, then why did we get to the point where Oxfordshire’s Helen and Douglas House received nothing from the CCG? While I appreciate that the Government are making the right noises on this, I am asking for some clarity on oversight. Are they checking and challenging the CCG, because I am not convinced that that has happened so far? It really should not take a petition of 48,000 people to get to the point where the CCG is finally starting to listen. That is ridiculous. Where else in the country is this happening? We have amazing organisations falling by the wayside.

There are some more specific things about Helen and Douglas House that I would like the Minister to address. The first is communication. The Government need to take some ownership of this. On 14 February, I wrote to the chief executive of Oxfordshire clinical commissioning group about the future of Helen and Douglas House. I was met with quite a lengthy waiting time and got a response—clearly a “cut and paste”—from the community and engagement team on 27 March. Their main argument was that Helen and Douglas House has the capacity to bid for contracts. Helen and Douglas House told me that the contract it was being asked to bid for was so vast, and the sort of care it was being asked to provide was so huge, that it did not feel it was the right fit for that pot of money.

It is a proactive organisation, so it reached out to the CCG and said, “We can’t bid for this”—in fact, Barnardo’s now has that contract—“but what we can do is this, that and the other. Can you help us? We’re providing a great service,” but it received radio silence from the CCG, with delay after delay. It had some meetings where it felt things were going forward, and then nothing happened. That lack of communication and lack of accountability for what the CCG does is the crux of what I would like answered today. If excellent organisations like Helen and Douglas House, which has a long-standing and illustrious history, are not able to engage with the CCG, where else is that going wrong, and what handle do the Government have on that? I welcome what the CCG has now done, but are we sure there are not hospices elsewhere where that is happening?

The last point I would like to make is about the false economy of not providing this care. This is critical. The intensive care nurses in the John Radcliffe, when speaking to the chief executive, said, “These are the children on the wards who we worry about the most.” These are the sickest children in our society, and if they are not being given that care before, and if the families are not properly equipped to do what they need to do to prevent these children from going into intensive care, we all know how much that costs. There is a cost argument. The children obviously would much rather not have to go into intensive care; they would rather have the care at home, or if their parents have respite, they can give that care properly. If we end up not spending the money, further down the line, all we will end up with is NHS trusts having to provide the intensive care for these children.

There is a disincentive in the system, because the money for NHS intensive care comes from the trusts, but the money for hospices comes from the CCG. It is clear to me that that is where the bottleneck lies. That communication is not working freely. The overall picture is not working well. We saw a move from Government, with the name change to the Department of Health and Social Care, earlier this year, towards more joined-up thinking in this area. However, I want to know what the Minister has been doing to unblock this specific issue. I was a little disappointed that, when I asked a written question on this matter, the Minister wrote back saying that there had been no discussions at all with Helen and Douglas House, despite the fact that it has been raised in this place and the other place.

We are now getting some traction, but £100,000 is not enough. Helen and Douglas House has asked for £215,000, which would bring parity with neighbouring counties. What can the Minister do to unblock this? What can she do to ensure that in future, other hospices like Helen and Douglas House do not have to make a massive media ruckus and go to their MP to get an Adjournment debate, and that they can provide the care that we desperately want the most poorly and vulnerable children in our society to receive?

Education (Student Support)

Bambos Charalambous Excerpts

Wednesday 9th May 2018 Commons Chamber

[Robert Halfon]

As so often, my hon. Friend is a mind reader. I will address her point, but of course she is right.

These jobs should not be limited to degree level; we should ensure there are apprenticeships in healthcare professions from level 3. We must have sufficient progression for those already working in the sector. The nursing associate role is a positive step that will provide opportunities for healthcare assistants to progress within the sector. From there, they could train to become registered nurses, if they wish.

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

Will the right hon. Gentleman give way?

[Robert Halfon]

This is the last intervention because I am conscious that other people want to speak.

[Bambos Charalambous]

In the light of the poor recruitment to the apprenticeship schemes, does the right hon. Gentleman agree it is best to keep both routes open—the bursaries and the apprenticeship schemes—to maximise the number of people coming into the system?

[Robert Halfon]

I thought that initially, but I have listened to my hon. Friend the Minister’s arguments. There was previously a cap, and not everybody was able to get into the system. If we can encourage people down the apprenticeship route, they earn while they learn, there is no debt and they get a lot more than they would get if they had a bursary.

Surgical Mesh

Bambos Charalambous Excerpts

Thursday 19th April 2018 Commons Chamber

[Owen Smith (Pontypridd) (Lab)]

I congratulate my hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) on securing today’s debate. This is the first occasion on which we have debated this issue on the Floor of the House—in the main Chamber—and it is a very important moment in the campaign.

I thank and congratulate all the women who have been campaigning on this issue, long before it was raised by any of us in Parliament—particularly the indefatigable Kath Samson, who has led the Sling the Mesh campaign quite brilliantly in recent years and made this such a salient issue in the media, and now in Parliament. From a personal perspective, I very much thank my own constituent, Carolyn Churchill, who came to see me about this issue several years ago and revealed to me the scale of the suffering and trauma—life-changing trauma—that she had experienced as a result of having mesh implanted. We campaigned to have her mesh removed, and that has been life-changing for her. I am delighted to see her with us today in the Gallery.

It would be easy to be extremely angry and passionate about this, but I do not want to do that today, nor do I want to list the many life-changing, debilitating ways in which people have been affected. I am sure that many other Members will speak about that. I want to speak a little more dispassionately about how we have got to where we are, the history of mesh, and some of the wider lessons. While this is a tragedy for individuals, it is clear, as the hon. Member for Totnes (Dr Wollaston) highlighted, that it also speaks to deep, substantive issues not just about mesh but about licensing, monitoring and the diffusion of devices into the health marketplace more generally.

So what is the history of mesh? Mesh was introduced in the 1970s, and withdrawn because it was not felt to be an effective way of addressing issues and because many doctors felt that there were too many side effects associated with it. Like many devices, it was then improved marginally, and it was reintroduced in the late ’90s and early 2000s. As my hon. Friend the Member for Kingston upon Hull West and Hessle said, it was marketed incredibly aggressively among doctors because it was perceived as being quick and easy—day case keyhole surgery as opposed to much more invasive, difficult and costly means of treating stress-related urinary incontinence, in particular, through colposuspension and autologous sling, using individuals’ own tissue to raise the bladder to deal with incontinence.

One understands why, in that set of circumstances where mesh was seen as safe and effective, doctors picked it up in huge numbers. In 2008-09, 14,000 women had an implant—the high point, as it were, of the usage of mesh. As my hon. Friend said, we have seen a general decline in usage over a period. Throughout that period, the Medicines and Healthcare Products Regulatory Agency, the National Institute for Health and Care Excellence, the royal colleges and Ministers in this place and elsewhere have said, in effect, that it is safe, with side effects in only 1% to 3% of patients—perhaps 3% to 5%, they have conceded on occasion, but still relatively small numbers and arguably, they say, within the bounds of acceptability for surgery.

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

Does my hon. Friend agree that had doctors not sold mesh aggressively to women, many women may not have chosen it as a way of solving their problems and may not have had the problems and complications they have now?

[Owen Smith]

Yes. The long and the short of it is that this has become such a widespread problem because younger women, in particular, were told by their doctor that there was a quick and easy way in which a minor inconvenience for many women—although a major inconvenience for some—could be dealt with.

Clearly, the scale of the side-effects was not apparent, for all the reasons my hon. Friend the Member for Kingston upon Hull West and Hessle listed, but notably because there is no long-term trials data in respect of devices. The sorts of complications that we now see emerge over a long period. That is why, in our country and across the world, such widespread concern about mesh has been emerging in every health market.

--- Later in debate ---

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

I congratulate my hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) on securing this important and timely debate. Excellent points have been made by all Members who have spoken, so I will be brief to allow time for the Front-Bench responses. We have heard about some harrowing cases involving people’s constituents, most recently from the hon. Members for Torbay (Kevin Foster), for Glasgow North West (Carol Monaghan) and for Thirsk and Malton (Kevin Hollinrake). There has been cross-party support for the motion and the demands on the Government to act. I think that everybody who has spoken today thinks that mesh should no longer be used in surgical procedures until the inquiry reports back.

On 6 February, I had the pleasure of meeting some of the remarkable women from the Sling the Mesh campaign, many of whom are in the Public Gallery looking down at us. These women have been left debilitated and in agony following mesh implants. I was shocked as each one told me about their own personal and horrific ordeal. They told me how they were in unbearable pain when they sat down or stood up, how they had gone from being active, energetic women in the prime of their lives to being left housebound, in some cases unable to work, with a complete loss of their sex life. I can only imagine the mental suffering that these brave women and other victims have had to go through.

One thing that I found particularly striking was how many of these women said that they almost did not have the mesh implants but were swayed by the casualness with which they were sold to them when they were weighing up their options on how best to resolve their medical conditions relating to prolapse or incontinence. None was told of the risks of vaginal mesh, and I am sure that if they had been they would have considered other, less risky, alternatives. No one goes to hospital expecting to be cured of one problem only to be given another a thousand times worse. There are serious questions that need to be answered about the mis-selling and promotion of mesh, and we have not had much of a response on that despite many requests.

I find it staggering that, despite the potential risks being known, mesh is still being used today. Surely its use should be stopped and women warned of the dangers. Even by the NHS’s own figures, 1% to 3% of vaginal mesh implants result in complications. The figure is far too high. Other studies have the figure as high as 10%, and it could be higher—we do not know. It is worrying that we have such cases at all. Whether the figure is 1%, 3% or 10%, even a one in 100 chance of being maimed by an implant is a price not worth paying.

The Government should follow the example of New Zealand, which has managed to stop using mesh. Is it really acceptable for the Government knowingly to allow women to be injured by the state in this way? How many more women need to suffer while they wait for NICE to complete its review?

The Government’s retrospective review of surgery for vaginal prolapse and stress urinary incontinence using tape or mesh is a welcome start to finding out how many women have been affected, but the scope of the review is too narrow and there is a real fear that women will be missed. Why cannot women from Wales, Scotland and Northern Ireland be included in the review, and what about men affected by surgical mesh?

I call on the Government to ban mesh implants immediately and to widen the scope of their retrospective review. NICE should bring forward its review and the Government should introduce pelvic floor physiotherapy on the NHS as standard for all new mothers. We need to find out what has gone wrong, and why. The victims of the mesh scandal have suffered enough. We need action now.

Autism

Bambos Charalambous Excerpts

Thursday 29th March 2018 Commons Chamber

[Paula Sherriff (Dewsbury) (Lab)]

I congratulate the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) on securing this debate and thank the Backbench Business Committee for providing the time for it. It is an important debate because, as we have heard, there are several hundred thousand people with autism, and of course millions of people will be in a family with one of those autistic people. It is important to thank Autistica, the National Autistic Society, Ambitious about Autism and all the other charities and organisations in the sector for the work that they do and the support that they give to those with autism. I also wish to recognise the Whole Autism Family in my constituency, which is run by Anne-Marie and Martin Kilgallon. They have two sons with autism and provide amazing support to other families in the area.

It is important to say that, although I am the shadow Mental Health Minister, as we have heard this afternoon autism is not a mental health condition. It is entirely possible for people with autism to have good mental health, but, sadly, for too many that is not always the case. As we heard from the hon. Member for North Ayrshire and Arran (Patricia Gibson), it is estimated that between 70% and 80% of autistic people develop mental health problems such as anxiety and depression, and four out of 10 children with autism have at least two mental health challenges. Indeed, Autistica highlighted mental health as the top concern facing people with autism and their families.

It is clear that more needs to be done to support the mental health needs of people living with autism. The reduction of the health inequalities experienced by people living with autism is a priority for the NHS mandate for 2017-18. That is of course welcome, but to tackle the disparities it is necessary to ensure access to appropriate mental health care.

The motion rightly highlights diagnosis—the vital first step towards getting support for people with autism. As we heard in the excellent contributions from the right hon. Member for Harlow (Robert Halfon) and my hon. Friend the Member for Alyn and Deeside (Mark Tami), getting a diagnosis is the first hurdle that children with autism and their parents need to get over to secure the support and education to which they are entitled. The NICE quality standard on autism recommends a maximum wait of three months from referral to first diagnostic appointment. It is clear that currently that standard is too often breached, and that the waiting time can be gamed by delaying later appointments. Some children have quite literally been left waiting to wait.

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

My constituent Patrick Samuel had to wait nine years before he was diagnosed with autism. It was only when he was diagnosed that he got the drugs and support that he needed. He is now a flourishing, successful artist. Does my hon. Friend agree that it is totally unacceptable for someone to have to wait for nine years?

[Paula Sherriff]

I think all Members would concur that waiting nine years is absolutely unacceptable. To be fair, that is at one end of the waiting-time limit, but it is clear that there are many delays in many areas, often running to years. One local authority has recently admitted that it has delays of 125 weeks. Collectively, Members from all parties need to work together to try to bring down delays of that length, because they mean that support and intervention may be less effective when it arrives, and lead to parents losing confidence in the system. As with many other conditions, illnesses or whatever we call them—it is difficult to find a suitable noun that actually describes autism—early intervention is absolutely the key.

There is clear evidence that a positive experience in the diagnostic process is associated with lower levels of stress and more effective coping strategies for families. We have heard in previous debates about the lack of data on waiting times. This April is meant to see the start of new standards on the collation and publication of such data. I hope the Minister will update the House on where we are with that. There is a need for better data on the number of diagnoses and who is being diagnosed with autism, so that we can identify where there are gaps. The National Autistic Society has reported that more than three quarters of people who use its adult services are male, but there is a concern that that may be related to a lack of recognition for women and girls with autism. Similarly, there is a generation of people for whom autism was not a recognised condition when they were younger.

Lymphoedema Services

Bambos Charalambous Excerpts

Tuesday 27th March 2018 Westminster Hall

[Tonia Antoniazzi]

I wholly agree with the hon. Gentleman. I will discuss training needs later—there is a definite need.

Lymphoedema can affect people physically, psychologically and socially. It has a significant impact on quality of life and prevents people from undertaking the normal activities of daily living. Reported issues include: massively swollen limbs that leak through clothes and soil carpets and beds; poor mobility; the inability to find shoes that fit and a limited choice of clothes; increased pain; inability to work; frequent admissions to hospital with cellulitis; stigmatisation and people being scared, anxious and depressed; and inability to cope and a feeling of lost control.

We might think that people can get treatment, but they cannot—that is the problem. Lymphoedema services are scarce. People suffering with lymphoedema cannot access the treatment they need or deserve. There is wide variation in the organisation and delivery of lymphoedema services throughout the United Kingdom. Some areas have commissioned full lymphoedema services—services for both cancer and non-cancer patients—others offer cancer-only services, and others provide no lymphoedema services at all.

Lymphoedema services that have been commissioned range from lone practitioners to small teams, so waiting and treatment times vary, as do treatment options. That diversity is not a result of patient need and is not patient-centred. Most people with lymphoedema go undiagnosed and untreated for long periods as a consequence of the poor level of knowledge among health professionals and the limited support from healthcare managers and commissioners. Lymphoedema is a growing condition, so what support are the Government providing to develop pre-graduate and postgraduate education for healthcare professionals to raise awareness of the condition? Something has to change.

Becoming aware of the lack of lymphoedema services in Wales, the Welsh Government listened to its members. I am very proud of that. The Conservatives might slate the Welsh NHS in the Chamber, but this is a wonderful area of work that has been developed in Wales, and I want to hail it. In 2009, the Welsh Government commissioned a lymphoedema strategy for Wales, which sets out clear aims to enable access for all lymphoedema patients to the appropriate services at the right place, at the right time and with the right person, regardless of whether their lymphoedema is related to cancer. Lymphoedema strategies have also been written in Northern Ireland and Scotland. England is the only nation not to have one.

In 2011, the Welsh Government invested £1 million to implement their lymphoedema strategy. The funding enabled lymphoedema services to be set up under every health board in Wales, managed by Lymphoedema Network Wales to maintain strategic oversight of the strategy for lymphoedema in Wales. Services are also made available in the more rural areas of Wales by the Tenovus Cancer Care mobile unit, which works closely with Lymphoedema Network Wales and the Abertawe Bro Morgannwg University Health Board.

Lymphoedema has always been a chronic, incurable condition, but new evidence suggests that significant improvements can be made for patients. In Japan and Europe, a super-microsurgical technique, which joins the defunct lymphatics to a functioning vein, has seen a 96% reduction in cellulitis episodes, and 70% of treated patients have stopped utilising compression garments as a result. The technique—lymphatic venous anastomosis, or LVA for short—is available on the NHS only in Wales. The Welsh Government supported the investment to make that happen and 42 patients per year can now have the innovative surgery that has the potential to cure their lymphoedema.

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

I have a constituent called Caroline, who is in her late 30s. She has had lymphoedema affecting her leg for several years. She recently had an infection and had to go to accident and emergency three times. She now has to wear surgical stockings for the rest of her life. Had she been diagnosed earlier, she would not be in that situation. Does my hon. Friend agree that, if a strategy had been in place, my constituent would not have needed to go to the NHS so often, saving money by controlling the condition when she was first diagnosed?

[Tonia Antoniazzi]

My hon. Friend makes a valuable point about the waste of money. The money is wasted on services because the lymphoedema is not being treated properly with the correct garments. We hope that that will be addressed so that the NHS can save money and be more effective.

We want better outcomes for patients as well as to save the NHS money. LVA is available privately in the UK, but not everyone has the £15,000 needed to have the surgery. LVA has the potential to cure lymphoedema and stops the need for admissions to hospital for cellulitis and for expensive compression garments. When will this surgery be available on the NHS for England, Scotland and Northern Ireland?

Wales also leads the way in developing a national paediatric lymphoedema service. Children can have lymphoedema, and in Wales 260 have the condition. Last summer I had the opportunity to meet some of them in Margam at an event organised by the Lymphoedema Wales Network. I saw them participate in a wide range of sports—that is important, because having lymphoedema does not mean people cannot participate in sport, and those young people were being actively encouraged to play football and rugby. The most important thing that came out of that day was the opportunity for young people to meet people like them, and for parents to meet one another. It was absolutely invaluable for those young people and their families to discuss things and have a support network.

Hon. Members should not think that Wales has it easy, because it does not. When it got the funding, the prevalence of lymphoedema was two per 1,000. It has now tripled to six per 1,000. It is the same story in Northern Ireland—when the Lymphoedema Network Northern Ireland was started, the prevalence was 1.33 per 1,000; it is now five per 1,000.

A small change can make a difference. If Wales and Northern Ireland can do it, why can we not have an equitable service among all nations? In England, I have been made aware that Herefordshire, Bedfordshire, Tamworth, Coventry, Luton, Southport and Aintree have services available only for cancer patients. Warrington, Barking and Bolton have no lymphoedema services at all. Morecambe bay’s services were under threat, but there was good news of additional funding. What is NHS England going to do to support its clinical commissioning groups in commissioning lymphoedema services, to end the inequity of service provision and patient suffering?

The NHS is wasting money trying to treat lymphoedema patients, as well as having a huge impact on patients’ lives. Many tell stories of wasted time, of being referred to numerous hospital specialties, of inappropriate wound dressings, with bandages often used, and of patients being admitted to hospital with cellulitis because the lymphoedema has not been treated. We need to save money and start treating patients with lymphoedema better. Let us improve education on chronic oedema, get more clinical expertise in the community to prevent complication and admissions, and ultimately, stop the current postcode lottery as well as the non-cancer inequity.

In 2002, a debate was held in this place. Very little has changed in the 16 years since. What will the Government do to support our constituents to gain the lymphoedema services they so rightly deserve? I would welcome the opportunity to facilitate a meeting between Lymphoedema Network Wales and the Minister at his earliest convenience.

NHS Staff Pay

Bambos Charalambous Excerpts

Wednesday 21st March 2018 Commons Chamber

[Mr Hunt]

I would like to pay tribute to my hon. Friend because, when he was working in my Department, he laid a lot of foundations for this deal. He chaired some very important meetings. In particular, one of the most important areas of consensus that has emerged, which he should take enormous credit for, is that we are saying today that the minimum salary for anyone working in the NHS will go up by £2,000. That is going to make a huge difference—100,000 people will benefit from that important change—and he should be very proud of that.

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

NHS trusts are spending £3 billion a year on agency staff to plug gaps in the workforce. Has the pay cap not been totally self-defeating and led to huge amounts of public money going to private staffing agencies?

[Mr Hunt]

What led to the mushrooming agency fee was the realisation, post Mid Staffs, that we needed a lot more nurses. Nursing staff numbers were going down until the Francis report was published, but the report created huge demand among hospitals, which realised they needed to improve patient safety by recruiting more staff. The hon. Gentleman will be pleased to know, however, that we are bringing down the agency bill, and I expect it to be significantly lower this year.

 Orkambi and Cystic Fibrosis

Bambos Charalambous Excerpts

Monday 19th March 2018 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Mr Evans.

I was recently visited by a constituent who has twin nine-year-old daughters, one of whom—Holly—has cystic fibrosis. At present, Holly can run, play and lead an active life, but she still needs treatment and will get worse. She receives treatment at Great Ormond Street Hospital and the Brompton Hospital. Because of her genetic composition, there is still no drug available that will help her to survive beyond her thirties, but with the research and development of drugs for other cystic fibrosis sufferers by Vertex, there is hope for Holly.

For the 10,000 other cystic fibrosis sufferers, there is a chance that their lives will be improved, but that hinges on drugs being approved by NICE. We know that NICE has already approved the drug Kalydeco, which only works for the 2% of cystic fibrosis sufferers whose genetic make-up it is compatible with. However, Orkambi has not been approved, despite potentially helping a wider tranche of cystic fibrosis sufferers. NICE has ruled that that would be too costly and that there is uncertainty around Orkambi’s long-term value and impact.

As we have already heard, Orkambi is widely available in the USA and in several EU countries that have seen the clear benefits of not having people spend time in hospital. In trials for Orkambi, there has been a 61% reduction in hospitalisation among those using the drug, and over a 96-week period a 42% reduction in lung decline. It is therefore disappointing to learn that despite Vertex trying to negotiate a pipeline deal with the NHS over future drug developments to tie in with Orkambi there is still no agreement. Are we really saying that there is no scope for negotiation? What price are we placing on the lives of cystic fibrosis sufferers?

Despite Orkambi being unable to help Holly, the fact that her parents are willing to campaign for others to get help is a testament to them and to the cystic fibrosis community. I ask the Minister to put pressure on NICE to reach a solution with Vertex, so that cystic fibrosis sufferers can get the medication that they need and deserve, and get it urgently.

Eating Disorders Awareness Week

Bambos Charalambous Excerpts

Tuesday 27th February 2018 Commons Chamber

[Edward Argar]

My hon. Friend makes an important point. One of the key themes drawn out from this and related research is that it should not just be one symptom or factor that determines when someone needs help; there is a basket of factors and considerations that demonstrates when that need is there and when treatment is needed. He is absolutely right, therefore, to highlight that point.

As we know, GPs do an amazing job, but, as my hon. Friend the Member for Henley (John Howell) said, we need to ensure that doctors’ medical training gives them the tools they need in this area, as in others, to recognise all the symptoms of an eating disorder; and to ensure that that training is kept up to date and that medical professionals are familiar with and follow National Institute for Health and Care Excellence guidelines on eating disorders, including its guidance that single measures—this touches on the point my hon. Friend the Member for Boston and Skegness (Matt Warman) has just made—such as body mass index and duration of illness alone should not be used to determine whether to offer treatment or what treatment to offer.

The Government have made huge strides in focusing on reducing delays through investment and funding and waiting-time targets, but these targets are not always fully applicable to everyone. As my hon. Friend the Member for Angus (Kirstene Hair) set out, the Government have a target of 95% of non-urgent cases involving under-19s being seen for treatment within four weeks. I understand from the latest figures that that target is now being met in 79% of cases. That is good progress, but there is still more to do. It is vital, however, that these waiting-time standards for accessing treatment also apply to over-19s. I would welcome the Minister’s reflections on that, and, of course, I reiterate what my hon. Friend the Member for Angus said and hope that the Scottish Government will follow the very positive lead set in this respect.

More broadly, I would also highlight the waits experienced for child and adolescent mental health services and adult mental health services more generally. In some parts of the country—I have highlighted this in my county of Leicestershire—delays in treatment can have a profound effect on individuals and the families who care for them. I hope that the Minister will touch more broadly on that bigger picture.

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

I attended an NSPCC event yesterday where we were made aware that young people, despite accounting for 20% of mental health need, receive only 9% of the mental health budget. Does the hon. Gentleman agree that more needs to be spent on meeting young people’s mental health needs?

[Edward Argar]

I will come very shortly to overall spending, but part of that is not just the overall size of the pot, but how that money is spent and works its way through the system to reach the frontline. In 2016-17, we spent a record £11.6 billion on mental health services, and that amount will continue to rise year on year until 2020-21, by which point 21,000 new mental health posts will be in place. This is all very welcome, and I commend the Health Secretary and his colleagues in the Department for it. Funding is vital. However, although £30 million per annum will be available over the next five years to fund eating disorder services, the way in which such funds are spent by clinical commissioning groups sometimes lacks transparency. At times it is hard to follow the funding from its source to ensure that it reaches the frontline. Implementation is key, and I hope the Minister will tell us how the Government are working to ensure that every penny reaches the frontline eating disorder services for which it is needed.

Community-based mental health services are often the most effective local services to help people, but they and in-patient mental health services are commissioned separately, by the CCG and by NHS England respectively. That can lead to a sense of a lack of joined-up care, and it can mean that people have to receive treatment many miles from their homes and families. That can place a huge strain on families, and, indeed, on family finances. Beat’s report suggests that in some instances the cost can be up to £32,000 as a result of lost earnings, travel and a range of other expenses. I believe that funds for eating disorder treatment should be held locally by the same budget holder in the same pot to create incentives for the development of improved treatment and reduced costly in-patient care, with CCGs working to extend their focus on early intervention to include the earlier stages of the illness.