Autism

Jim Shannon Excerpts

Thursday 29th March 2018 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) on bringing this debate to the Floor of the House, and I thank all the right hon. and hon. Members who have made significant and wonderful contributions, including personal points of view, to this debate. World Autism Awareness Day is designed to highlight autism and, more importantly, the struggles that those who have autism go through and how we as a society can help them. We certainly are making strides towards that. The Minister will be able to highlight some of the things that we have done and, to be fair, some of the things that we still need to do.

Some local churches in my community allow local autism groups to use their facilities as a safe space to meet and have fun with the children in a controlled atmosphere. The Moviehouse chain of cinemas in Northern Ireland screens autism-friendly screenings on the first Friday of every month, making certain changes to make the experience more enjoyable for the child and their families, including having the sound and lights on low and no trailers, giving people the freedom to move around and take their own food and drink, and offering free entry for carers with a valid CEA card. Odeon cinemas also offer certain autism-friendly screenings.

I want to say a public thanks to those chains and to my own local cinema, Movieland Newtownards—now part of IMC chain since the sad passing of Ernie Watson—which has plans to begin autism-friendly screenings in my constituency. I suggest that other hon. Members have a chat with their local cinemas to see whether they will do the same. Such screenings may not make the most money—that is not what they are about—because people are allowed to bring in their own snacks for their children to eat and because there are no adverts, but they provide a service that is appreciated by families throughout the community. The life of an autistic child can be somewhat isolated, and the nature of the complex needs of the child can also mean an isolated family life for those who live with the experience every day.

Research cited by the Royal College of Psychiatrists that has been mentioned by others highlights the high levels of suicide among autistic people. Roughly 40% of autistic young people have symptoms of at least one anxiety disorder, compared with 15% in the general population. The hon. Member for Glasgow South West (Chris Stephens), who has just left the Chamber, referred to the welfare changes, and I want to put on the record my concerns about them. Autistic children and adults are affected by changes to ESA, work capability assessments and PIP. Assessors need to be aware of what it is to have autism. With respect, if they had that ability, it would make things a lot easier.

[Drew Hendry (Inverness, Nairn, Badenoch and Strathspey) (SNP)]

Constituents have told me that they are absolutely terrified by the assessment process, so does the hon. Gentleman agree that there needs to be a far more sensitive and direct approach to dealing with people with autism?

[Jim Shannon]

The hon. Gentleman is absolutely right, and he and I regularly share comparisons between our constituencies. Assessors need to be sensitive, reactive and understanding.

Autism is a massive issue for schools to deal with, and only a seasoned teacher may be able to spot the signs of autism in a child. The hon. Member for Berwick-upon-Tweed (Mrs Trevelyan) referred to a child who was able to go and sit on a cushion behind a desk, and that shows an understanding teacher who knows how to deal with such issues. We cannot reach out and cure the situation as such, but it is important that we build in the support systems. While there has been significant improvement in the number of diagnostic assessments, and many hon. Members have referred to early diagnosis—the hon. Member for Berwick-upon-Tweed referred to her own circumstances in a personal and honest way, and it is important that we listened to that—coverage is still very patchy. Will the Minister outline how the Government are ensuring equity of access across the country? Have discussions been held with the Northern Ireland Department of Health to ensure parity of accessibility?

Northern Ireland has a slightly different system in that we have the Autism Act (Northern Ireland) 2011, and the hon. Member for North Ayrshire and Arran (Patricia Gibson) referred to the Scottish legislation, which also came into force in 2011. The regions across the United Kingdom have some really good stuff in place and have done significant work, and I suggest that we should be exchanging that good practice. If we do that, I think we will all gain. Northern Ireland has gained from what has been done in Scotland, and Scotland and Northern Ireland can gain from what you do in England. I again suggest very gently that you could really gain from what has been done—[Interruption.] Sorry, Madam Deputy Speaker, not you; I meant the Minister. Someday I will learn not to use that word—you live in hope.

In Northern Ireland, one in 40 or 2.5% of children have a diagnosis of autism. Accurate prevalence figures for adults can be difficult because many adults with autism do not have a formal diagnosis so the statistics are misleading, but 25% of individuals with autism have an accompanying learning disability. It is not just the autism but the spin-offs such as anxiety disorders and learning disabilities. Their education may be a wee step behind, but we have heard good things today about the results for children when effort and time are put in.

The fact that four males are diagnosed with autism for every one female is perhaps an indication that we might need to address the gender issue. However, we know that it is sometimes harder to diagnose females with autism, so the statistics may hide the true number of autistic females.

Statistics show that 16% of autistic adults are in full-time employment, despite individuals with autism having ability. Again, it is important to put the issue of employment on the record. Many autistic people, especially those diagnosed in adulthood, have little or no access to post-diagnosis support, as the hon. Member for Cardiff West (Kevin Brennan) also mentioned. Young adults with autism should not be forgotten, so what are we doing nationwide?

Diagnoses of autism are as different as snowflakes, which means that a one-size-fits-all approach simply does not work. We have to look at it individually and not collectively, because that is not how it is done. We must diagnose the level of each individual and provide appropriate support not simply to them but to their family. It must also be highlighted that, although one in four people with autism has a learning disability, three in four do not. Whether or not there is a learning disability, we must do more to support all of them to reach their full potential rather than be held back by a lack of understanding from society in general.

Our job in this House, through the Minister, whom we are pleased to see and to support, is to ensure that adequate support services are in place and to raise awareness to foster greater understanding among the general public.

Patient Safety

Jim Shannon Excerpts

Wednesday 28th March 2018 Commons Chamber

[The Minister for Care (Caroline Dinenage)]

I wish to start by congratulating my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson) on securing this really important debate on patient safety. All patients have a right to expect care that is compassionate, effective and safe. The courageous testimonies of individuals such as Julie Bailey, who exposed the scandalous failings at Mid Staffordshire NHS Foundation Trust, and Sara Ryan, who campaigned fearlessly following the death of her son, Connor Sparrowhawk, while in the so-called care of Southern Health, show that safer care starts with listening to patients and their families.

It is important that we recognise that there are many victims when care fails—the families and the loved ones, of course, but also the healthcare professionals who carry the burden of their mistakes. The great majority of NHS patients receive effective and successful care. However, according to international studies, levels of healthcare harm range from 1% for the most “negligent” adverse events, to 8% to 9% for preventable adverse events. We are clear that any level of harm over 0% is unacceptable, and we believe that the route to a safer NHS is through transparency, learning and action. What is most frustrating is when harm persists, despite our having the knowledge and wherewithal to prevent it. There are approximately nine “never events” in the NHS every week—avoidable harms such as wrong-site surgery or foreign objects left after an operation.

Thirty years ago, the aviation industry stood at a similar crossroads. Since then, there has been a massive reduction in fatal accidents every decade, despite a huge increase in the number of passengers. According to the Civil Aviation Authority, there is an average of one fatality for every 287 million passengers carried by UK operators. Compare that with the 150 avoidable deaths every week across the NHS. That rate would potentially equate to the loss of 52 airliners per year.

How has the airline industry transformed its safety record so successfully? The key has been a “just culture” that recognises honest human error, but continues to hold people to account for criminal acts or wilful negligence. Creating a safe space that protects the evidence provided by pilots and air traffic controllers when there is an investigation is a cornerstone of the approach. It helps to create a culture in which people can be open about their errors and a system of learning from one’s mistakes, rather than blaming individuals.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Sleaford and North Hykeham (Dr Johnson) on securing this debate on an important matter. NHS staff are greatly restricted by their work and the long hours they do. We all know that and pay tribute to them. Sometimes, however, we have to look at better ways of keeping records and at innovations to streamline things to make sure that the real focus of NHS staff is on the work that they do. Has the Minister looked at streamlining and innovations to take away the red tape that restricts the caring job that NHS staff do?

[Caroline Dinenage]

The hon. Gentleman is absolutely right. The more we can innovate and put in place the technology that helps to streamline day-to-day processes, the more that will help NHS staff, who do such a marvellous job, to do their job even more effectively and efficiently.

As my hon. Friend the Member for Sleaford and North Hykeham rightly said, to err is human. I am told that every year, 30,000 motorists put diesel fuel into their petrol cars—that is around 15 every hour. Those people are not intentionally destructive or feckless, they are human. Of course, I am not making an analogy with medical mistakes, which can be significantly more damaging and life-changing than the need to get a new engine, but in the same sort of way we need to move away from a blame culture in health—away from investigations that single out one individual rather than seeing their actions in the context of a complex overarching system.

GP Recruitment and Retention

Jim Shannon Excerpts

Wednesday 28th March 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

Thank you, Mrs Moon. I did not expect to be called quite this early, but I am very pleased to speak at any time in this Chamber, as everyone will know.

I thank the hon. Member for Houghton and Sunderland South (Bridget Phillipson) for setting the scene and giving us the chance to participate in the debate. Its title is “GP Recruitment and Retention”, and I am very pleased to speak on this topic. The title does not refer to a particular area, which gives me the opportunity to talk from a Northern Ireland angle—although as most hon. Members will know, that would not prevent me from speaking from a Northern Ireland angle anyway.

During the debate on the Northern Ireland Budget (Anticipation and Adjustments) Bill just last week, I raised the issue of GPs, out-of-hours services and so on. I highlighted the fact that we need to improve the accessibility of GPs and enhance the capability of GP out-of-hours services to help with the immense pressure that our accident and emergency departments are under. The fact is that we are an ageing population, which increases demand on GP services, and at present we seem unable to meet the demand.

The Minister and I seem to meet in this Chamber on many occasions, and also in many Adjournment debates in the main Chamber. He is obviously a very popular Minister, but he also has a remit that includes many of the issues in which I and other hon. Members have an interest.

In Northern Ireland, this issue has certainly been a big concern. GP practices have been moving away from the old surgery system to a new system in the hope of triaging demands on doctors and surgeries. Health is a devolved matter, but I want to give a Northern Ireland perspective to this debate. Thankfully, the Department of Health’s permanent secretary in Northern Ireland has released funding for a scheme that was approved by the outgoing Minister of Health but not implemented before the untimely demise of Stormont, which is now in limbo-land. It saw the investment of an extra £3.9 million, following investment earlier in the year of £1.9 million for elective care and £3.91 million to continue the roll-out of nearly 300 practice-based pharmacists. I know that the Minister is deeply interested in this subject, not just because he is the Minister responsible for it but because he has a genuine and sincere personal interest. I hope that details from Northern Ireland might be of some help in considering what is done here on the mainland and in other parts of the United Kingdom.

The permanent secretary said at the time:

“Given the current difficult financial position, investing nearly £10m more in GP services, the largest additional investment in recent years, reflects the Department’s commitment to the continued development of sustainable and accessible primary care services…The Department is also introducing changes to…eligibility to the sickness leave scheme for GPs.”

That is another thing we have looked at in Northern Ireland, and perhaps the Minister will comment on it. The permanent secretary continued:

“It is estimated that these changes will save GPs more than £2.5m per year in sickness leave insurance premiums.”

The thrust of the debate so far, and undoubtedly of the speeches to come, is about how we can retain GPs. The hon. Member for Houghton and Sunderland South clearly made that point, and I too think that that is what we need to try to do.

The move to which I have referred was made in a very uncertain political climate back home in Northern Ireland. Few other decisions to implement schemes have been taken by any Department’s permanent secretary. We are slowly moving towards what will perhaps be a hybrid system of government in Northern Ireland, whereby we can ensure that the health schemes move forward.

I have spoken to former GPs, who have illustrated to me how much the system has changed and how happy they are to retire. Some have begun to do a few hours in GP out-of-hours services, which takes a bit of pressure off the ordinary GPs, but it is important that we have a system that sustains itself, and the pressure and stress that services are under has seen most GPs walk away from that system. We are trying to stop GPs walking away—that was the point that the hon. Lady made in introducing the debate, I fully support it. The simple fact is that our doctors cannot cope and we need to help them find a new way forward.

In 2016, 36% of the 15,430 people who died in Northern Ireland were aged under 75, compared with 50% 30 years previously. The resident population of Northern Ireland rose by 10,500 people to reach 1.862 million in the year to June 2016. Every GP surgery knows that the people on their books who need the most attention are the grey vote and the young families. Our GPs are great, and we support them greatly. We understand their position—we know the pressures that they are under and we have the deepest respect for them.

One of my local surgeries has heavily invested from its own budget in a machine that can determine whether chest infections are bacterial through the practice nurse taking blood and analysing it on-site. That innovation stops the surgery sending people for analysis in hospital and facilitates the provision of better care in the GP surgery. It allows antibiotics to be prescribed and means less pressure on the hospital. Such a machine would help every surgery. Sometimes we have to look at a different way of doing things. If we can do them better, let us do that. We should be making funding for such innovations available, for the benefit of all of us across the whole United Kingdom of Great Britain and Northern Ireland.

Due to the stringent nature of benefits assessments, many practices in my area now refuse to give support letters for benefits. That is another pressure on GP surgeries all the time. I am constantly contacting GPs on behalf of my constituents, saying that they need a letter about their health condition to support their application for disability living allowance—personal independence payment, as it is now—and employment and support allowance. The GP says, “Let them write to us; we will reply,” and they do, but they usually send a list of the constituent’s appointments with the GP, which is not what PIP is about.

I am adhering to your timescale, Mrs Moon—I have worked it out, so I know what time I will have to stop.

A retired doctor I am very friendly with suggested to me—I know the Minister is sympathetic to this idea—that we have a bursary scheme whereby if a medical student will commit to doing five years or more at a surgery, they will have some or all of their student debt written off. That would encourage people to get into GP surgeries and make a difference for five years or so. I am given to understand that the Department are looking into schemes like that, and I hope so. I am interested to hear the Minister’s response to that idea, because I think that might provide encouragement for some of the young student doctors who wish to go on to general practice. If we provide that incentive through a bursary, I think it will be a massive step forward in addressing the issues, as the Department proposes to do by reducing the pressure on GPs and increasing their number.

Have any discussions taken place with the regional devolved Administrations so that they can respond? The Scottish National party spokesperson, the hon. Member for Central Ayrshire (Dr Whitford), has vast knowledge of medical issues, and I know that her contribution to this debate will make clear what has been done in Scotland. Yes, it is a devolved matter, but the NHS is nationwide and this scourge in our surgeries is in every area. A focused, co-ordinated approach is the best one to take, and I ask that the Department focuses on this vastly important issue. We need good GPs, and we need to support GPs. If we do not do that, there will be a domino effect on our hospitals and all other NHS institutions. We need to encourage our first line of defence, which is GPs, and ensure that defence is sure and certain. At the moment, the fact of the matter is that it is struggling.

--- Later in debate ---

[Dr Whitford]

I absolutely welcome them. Similarly, in Scotland the new graduate medical programme will take on people who have done other degrees, and that is particularly aimed at encouraging those people to go into general practice and rural practice.

[Jim Shannon]

May I gently ask the hon. Lady whether Scotland has a bursary scheme? Both I and the hon. Member for Caithness, Sutherland and Easter Ross (Jamie Stone) referred to that, as we feel that such a scheme might help.

[Dr Whitford]

Obviously, in Scotland we do not have tuition fees, so that is a considerable difference in student debt, particularly for a five-year medical course. We do not, as yet, have a system of bonding or tying students down. The worry is that that would create a feeling of being trapped, and that as soon as the bond finishes, the person runs away. I am sure that all Governments in the UK are thinking about such things, but it is about working out whether such a scheme is beneficial or negative in the long term. We do have a GP bursary scheme for those entering a traineeship, so that when someone moves from a hospital where they work on-call, and becomes a GP trainee, the drop in salary is compensated.

As the hon. Member for Caithness, Sutherland and Easter Ross (Jamie Stone) said, in Scotland we have a particular issue with the provision of rural services. We have a much higher ratio of GP per head of population, with 91 GPs per 100,000 people, as opposed to 71 in England, 73 in Wales and 70 in Northern Ireland. What often gets forgotten when people look at the weirdly angled weather map, is that although Scotland is one third of Great Britain’s landmass, it has 8.3% of the population. Anything that involves providing services across an enormous area is a challenge. We also have 70 inhabited islands that require services. Our recruitment and retention fund is putting additional money into this issue. The Scottish Rural Medicine Collaborative involves 10 health board areas, and relocation money—the golden hello for trainees or indeed any GP moving into practice—has been increased from £2,000 to £5,000. Any GP moving into rural practice will have a golden hello of £10,000, and trainees will have £20,000. That has been rolled out from the 44 island practices to all 160 rural and remote practices.

One key issue driving this problem, which perhaps is not often recognised, is the change from full-time to part-time working. Headcount for GPs is up by 5% in Scotland, but down by 4% from 2013. The change seems to have been in the last five years—indeed, there is a real culture change as the next generation comes in. When my husband became a GP, he was the first part-timer in his practice. They interviewed all the women before him, because it seemed so weird to have a man who wanted to work part time—that is because I was always in the hospital. Now, out of eight GPs, only two are full time. The number of patients in the practice has not changed, but instead of six actual GPs, there are eight. Therefore, the average GP is working considerably less. In England, the change in headcount of those looking to work full time meant that numbers went from 39,000 to 27,000. That shows the dramatic difference between the full-time equivalent and headcount, and it means that the average GP is working about 70% of what a full-time GP worked. The problem for any Government is that they then need to train 30% more GPs to cover that.

The key, however, is satisfaction. At the deep end, the 100 most deprived GP practices in Scotland face the inverse care law: people do not demand, and therefore service is not delivered. Govan health centre is running the SHIP project—social care and health integrated partnerships, and that innovation is now being picked up elsewhere. It means that GPs have extra time, and a significant multidisciplinary team, but in those areas, 31% of patients will have four or more conditions.

We have an even deeper problem, however, which is the attitude to general practice. Other specialisms look down their nose at it, and therefore a student may not be encouraged to enter general practice. Students are not getting enough exposure to general practice, either as students or in their foundation years. We also have a particular problem with the two foundation years since “Modernising Medical Careers” came in. We pour all our young doctors into a hopper—a computer—and they get divvied out. They will struggle to be with their family or where they were living before. In 2011, 29% of young doctors left after the two foundation years. Last year it was 50%. They do not feel part of the team or have a sense of continuity—things that are utterly crucial to general practice. Therefore, although we may be putting in more money and coming up with schemes, we must also reform the foundation years so that we do not have an entire lost generation.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Steve Brine)]

It is a pleasure to see you on your throne this afternoon, Mrs Moon.

I have a lot of time and respect for my shadow, the hon. Member for Burnley (Julie Cooper), but what a counsel of despair that was. As the sun comes out after a day of rain in London, let me see if I can bring some sunshine to our proceedings.

I congratulate the hon. Member for Houghton and Sunderland South (Bridget Phillipson) on securing the debate. She spoke passionately, as always, about her constituents and her area. The hon. Member for Strangford (Jim Shannon) said that we are often in here together and share many of the same subjects. That is true but, to be fair, he is in here even more than I am.

I note the Prime Minister’s announcement yesterday that she intends to bring forward a long-term plan for the NHS with the Secretary of State, Ministers and our partners. That will build on our record of extra funding for the national health service in England year on year since 2010, to deliver a NHS that is fit for the future. I agree with the shadow Minister that this is about the wider NHS, and that we cannot see primary care in isolation. We are able to do what we have done for the past eight years because of the state of the economy, which we have got into a better place. When the economy fails, the NHS catches a cold or much worse, which is important.

[Jim Shannon]

rose—

[Steve Brine]

I will not give way at the moment.

As everybody has said, we recognise the importance of general practice as the heart not only of our NHS, but in many ways of the country. It is as much about prevention before people get into the NHS as it is a gateway to it. That point was made well by the hon. Member for Central Ayrshire (Dr Whitford), who spoke for the SNP. As others have kindly said, I am absolutely committed to ensuring that the NHS has the resources, workforce and Government backing to make it fit for the future.

As the hon. Lady said, it is a great success that we are living longer, but an ageing population and more people living with long-term conditions, or so-called comorbidities, means that general practice will become more important than ever in keeping well and living independently for longer. On Friday, I spent a morning sitting and observing—lucky patients—a general practitioner in Hampshire, not in but near my constituency. I watched him do his morning surgery. It was a brilliant thing to do as the Minister with responsibility for primary care, but I would recommend it to any Member who has that relationship with GPs in their area. By sitting and watching, it is possible to see what comes through the door and the pleasures of general practice, which is not dissimilar to the surgeries we hold as MPs.

The number of people over the ages of 60 and 85 is set to increase by about 25% between 2016 and 2030, and the number of people living with long-term conditions is increasing. In 2017, almost 40% of over-60s had at least one long-term condition. I am sure we can all think of people in our families who are in that position—I certainly can. We recognise that that places general practitioners in England under more pressure than ever before, and are taking comprehensive action to ensure that general practice can meet the demand.

The NHS set out its own plan for general practice in the general practice forward view. We have backed that with additional investment of £2.4 billion a year by 2020-21, from £9.6 billion in 2015-16 to more than £12 billion by 2020-21. That is a 14% increase in real terms. That is not made up—those are genuine figures, on the record. As has been said, we have also announced our ambition to grow the medical workforce to create an extra 5,000 doctors in general practice by 2020, as part of a wider increase to the total workforce in general practice of 10,000. We recognise that that is an ambitious target—it is double the growth rate of previous years—but it shows our commitment to growing a strong and sustainable general practice for the future.

This debate is about recruitment and retention, so let me break those down. NHS England, which we work with—it is approaching its fifth birthday—and Health Education England are working together with the profession to increase the GP workforce. That includes measures to boost recruitment, address the reasons why GPs are leaving the profession and encourage GPs to return to practice. We recognise that GPs are under more pressure than ever, but we want them to remain within the NHS and are supporting them to do so.

The hon. Member for Stroud (Dr Drew) made the point about recruiting and then following through. As I said at oral questions last week, there are things we can do, but there are things the profession can do too. If doctors in general practice are a counsel of despair, it is little wonder that people do not want to follow them. There are some good, positive voices in general practice, ably led by Helen Stokes-Lampard, who leads the Royal College of General Practitioners. She is a brilliant example of the cup being half full. That kind of positivity is very important—it is a partnership.

Lymphoedema Services

Jim Shannon Excerpts

Tuesday 27th March 2018 Westminster Hall

[Tonia Antoniazzi (Gower) (Lab)]

I beg to move,

That this House has considered provision of lymphoedema services.

It is a pleasure to serve under your chairmanship, Mr Gray, and I thank the Minister for being here to respond. This is the first Westminster Hall debate I have secured, and I am proud it is on an issue that affects many people in the United Kingdom. It was first drawn to my attention by my constituent Melanie Thomas MBE.

Lymphoedema or chronic oedema is a chronic swelling due to the lymphatic system failing. It mainly occurs when the lymphatic system is damaged by surgery, radiotherapy, trauma or infections. People can also be born with lymphoedema if the lymphatics have not developed properly. It affects people of all ages, and the swelling can occur in any part of the body. People think it is rare, but it is not, and research suggests that about six people per 1,000 have lymphoedema which, to put that into perspective, is about 400,000 people in the UK. If we look at the legs and feet of people in supermarkets or even here in Parliament, we will see swollen oedematous legs.

The problem of chronic oedema is getting worse as we get fatter and live longer with the consequences of other health conditions. Fifty-five per cent. of the average community district nurse case load is people who have swollen oedematous legs, with or without wounds. Such nurses, however, are not lymphoedema experts, and most do not have the skills in lymphoedema bandaging or prescription of compression garments.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on achieving this Westminster Hall debate. She referred to 400,000 people suffering from lymphoedema. Macmillan Cancer Support has estimated that there are 124,000 sufferers in the UK. Does she agree that there must be a better NHS support system, including more practice nurses, and specific training in lymphoedema care? The Government need to allocate the funding to support those suffering from this chronic condition.

[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.

Phenylketonuria and Kuvan

Jim Shannon Excerpts

Thursday 22nd March 2018 Commons Chamber

[Vicky Ford (Chelmsford) (Con)]

I would like to bring to the House’s attention the condition known as phenylketonuria and the drug sapropterin, which is known under the trade name Kuvan. I very much thank my hon. Friend the Member for Spelthorne (Kwasi Kwarteng) for being here today; he raised the same matter in an Adjournment debate six years ago. I also thank the Minister—another fantastic Essex MP—for being present, as well as the hon. Member for Strangford (Jim Shannon), who has a constituent with the condition. I co-chair the all-party group on rare, genetic and undiagnosed conditions, but I raise this issue primarily as a constituency MP.

This is my first Adjournment debate, and I would like to discuss the case of one of my youngest constituents. It was at one of my first constituency surgeries that I met Natasha Cotter, who told me about her daughter, Cait. Cait and her father are in the Gallery. Cait has phenylketonuria, otherwise known as PKU. It is very, very rare.

I am sure that all of us who are parents remember those first moments when we hold our new-born baby in our arms before it is taken away and given the heel-prick test. For the vast majority of children, that test is clear, but for one in 10,000 babies, it will show that the child has PKU. Without treatment, these children can become very suddenly and very seriously ill.

People with PKU cannot metabolise phenylalanine, an amino acid found in protein. Without correct treatment, the amino acid can build up to levels that are toxic to the brain. If PKU is unmanaged, it results in severe and irreversible brain damage. The treatment for children affected is to remove almost all natural protein from their diet.

My constituent Cait is 10 years old. She can metabolise only 11 grams of protein a day. She is restricted in every eating experience of her life. Her day is ruled by limited food and constant protein supplements—those drinks taste foul and smell unpleasant. When other children are sharing a meal, or perhaps a birthday cake or chocolate, Cait can only have her protein drink. Her parents tell me that she is permanently hungry. They say that every day since she was born has been filled with the joy that she brings, but also the misery associated with the daily management of her lifetime condition.

The severe restrictions of a PKU diet place a great burden on patients and their families. The phenylalanine content of all food needs to be carefully restricted, including with vegetables such as potatoes and cauliflower. Cait’s grandmother has given up work to care for her. In fact, research shows that more than half of the carers of a child with PKU have stopped working, reduced their hours or changed their job so that they can help to manage the child’s diet. Unsurprisingly, the constant worry about what their children are eating, and whether brain damage may be caused by everyday food, puts a huge emotional strain on families. A recent study found that 59% of mothers caring for PKU children had clinical levels of psychological distress themselves. Furthermore, problems with learning difficulties are frequently reported in children with PKU. A survey of families found that 43% of children had problems staying focused at school, with 30% of families reporting that their child had depression or anxiety.

But there is hope. For one month, Cait was put on a trial of sapropterin, a drug made by BioMarin and marketed under the name Kuvan. During that trial, Cait’s ability to metabolise phenylalanine increased threefold from 400 mg to 1,200 mg a day—the equivalent of 24 grams of protein—which allowed Cait to eat a normal vegetarian diet. Her parents told me that she was a different child and so happy to be able to eat real food. Even a visit to the supermarket was a real adventure. Her mood lifted, the nightmares stopped and she increased in alertness. Her teacher asked what had changed, because she was a different pupil at school.

Sapropterin is the only licensed non-dietary treatment for PKU. It does not work for all genetic variants of the condition, but it benefits about 20% to 30% of sufferers. That is a tiny number of people: about 150 children in the whole country, or, including adults, fewer than 350. These people are so rare, but for those such as Cait, the drug is life changing.

Sapropterin is available in Austria, Belgium, Bulgaria, the Czech Republic, Denmark, Estonia, France, Germany, Hungary, Italy, Latvia, Lithuania, Luxembourg, the Netherlands, Norway, Portugal, Romania, Russia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey and Ukraine, as well as the United States of America. However, except for a small number of women during pregnancy, it is not available in England on the NHS.

I have written to the Secretary of State for Health and Social Care to draw Cait’s case to his attention. I have also written to my local NHS clinical commissioning group, which sent me to NHS England. NHS England recommended an individual funding request, but for such a request to be successful, the patient has to be considered exceptional. So far, only those with additional conditions have been able to access the drug via that route. The patient has to prove that they have PKU and another condition, but how likely is that? PKU children are exceptionally rare—there are only 150 of them in the country—so they are already exceptional. For patients such as Cait, this is an impossible barrier. In fact, I have been told that only three patients have ever successfully managed to be prescribed the drug through an individual funding request.

Last summer, NHS England said that it would review the decision on sapropterin. Last month, it wrote to the patient organisation, the National Society for Phenylketonuria, to say that the decision would now be made by the National Institute for Health and Care Excellence. Last week, the patient organisation wrote back to NHS England because it is not clear what process will be used or when the decision process will begin.

I understand that funding for all treatments is not unlimited and that decisions do need to be made in a rational manner, but patients with PKU believe that, as well as the positive health benefits, there would be positive financial benefits to the public purse from commissioning this drug. The NHS estimates that Kuvan could cost between £14,000 and £45,000 per patient per year, but BioMarin, the manufacturer, has told the patient organisation that it is willing to make substantial discounts.

Furthermore, the price needs to be weighed against the costs of not having the drug. For adults, the protein-restricted diet alone costs the NHS £12,000 a year. The average cost to the taxpayer of each parent who gives up work to care for their child is another £5,500. A third of children need additional help at school, the cost of which varies, but the typical notional budget for a child with special educational needs is another £6,000.

[Jim Shannon (Strangford) (DUP)]

I am not normally in the Chamber for the Adjournment debate on a Thursday afternoon, but I am here today because of the timing of this debate and because, as my party’s spokesperson on health, I am very interested in this subject. The hon. Lady has very passionately, and in a forensic and detailed way, outlined the case for making this drug available. Not only does the individual need the drug, but the family sometimes need it as well, because of the mental and physical impact the situation has on them. I support the hon. Lady’s request that the Minister makes this happen. For 150 people, it is a small price to pay. As the hon. Lady said, when we add it all up, the good health of a child or an adult is worth such a price.

[Vicky Ford]

I thank the hon. Gentleman very much for his comments. I completely agree that we need to look at the wider issues. In fact, we should also look at what happens if the condition is not successfully managed, because that can be even more expensive. For example, if a woman with PKU gets pregnant and the condition is not well managed, the child she bears will be at very high risk of having substantial long-term disabilities. If a child with PKU does not manage to stick to their diet, they are at risk of permanent brain damage. All those wider costs should be taken into consideration when making this assessment.

The patient organisation is concerned that NICE may decide to restrict the drug and offer it only to those it considers to be high-need patients. The drug might be given only to patients who have refused to follow the strict diet, so it would actually discriminate against those who have done the right thing and worked so hard to maintain that very difficult dietary control. I say to the Minister: let us to try to break this deadlock. BioMarin and NICE need to engage with each other in a transparent way that has the full support of the patient organisation. The whole patient population should be considered, and those who do the right thing with their diet should not be put at a disadvantage.

There is a bigger issue. This is not just a debate about one patient or one drug, but a wider one about how we in Britain approach new medicines and treatments, especially for rare diseases. Britain is a world leader in science, especially the life sciences, and we are home to the human genome campus. The amazing, visionary 100,000 genomes project has set us at the forefront of the global revolution in medical research. Our unique NHS gives researchers the ability to access large quantities of reliable and detailed patient data, which helps them to identify very, very specific genetic divergences. That means that medics can increasingly pinpoint the exact cause of a rare condition, and discover specifically which one of a new generation of personalised medicines will give the most effective treatment for an individual’s condition. Life sciences lie at the heart of the Government’s industrial policy. However, if we are to stay at the forefront of world medical research, it is vital that discoveries are not only made here, but trialled, tested, and prescribed here.

NICE is a world leader in assessing medical health technology, and many other countries have chosen to follow its approach. Nevertheless, the world of medical research is changing exponentially, and if NICE is to continue to hold the confidence of researchers, physicians and patients, it must prove that it can evolve and evaluate even the most innovative treatments, and especially advanced medicines such as cell and gene therapies. When NICE approves a new treatment, we must ensure that the NHS can commission it effectively. Today the NHS cannot commission a drug unless it has been to NICE. Before a drug is granted marketing authorisation, there is the option for the company to make it available through the early access to medicines scheme, but after that marketing authorisation, and before NICE approval, there is no route to funding except through individual funding requests.

As the Minister knows, most rare diseases are very, very rare—at least some of them are—and the overall cost of treating them is a small part of the NHS budget. We must find a better way for all parties to work together to facilitate the passage of orphan drugs for rare conditions through NICE and the commissioning process.

I thank colleagues and the Minister for listening to my remarks, and I thank the Cotter family for being here today. Britain is a world leader in medical research, so let us ensure that British patients, such as my constituent, Cait, can be among the first in the world, not the last, to benefit from medical discoveries.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 20th March 2018 Commons Chamber

[Mr Hunt]

I hope that we are crossing the valley into eternal life because we have a fantastic life sciences industry that is worth £61 billion and employs 250,000 people. The right hon. Gentleman is right—he was involved in this when he was Business Secretary—that part of that is about having close links with the key people who make decisions about where to invest their resources.

[Jim Shannon (Strangford) (DUP)]

With companies such as UltraLinq raving about Belfast’s ability to provide technology support and skills from local universities, will the Secretary of State confirm what steps he is taking to invest departmental moneys in universities to set up life sciences skill centres in co-operation with the Department for Education?

[Mr Hunt]

I reassure the hon. Gentleman that we are conscious of the importance of a good outcome to the Brexit talks for universities, including Queen’s University Belfast, for precisely the reason raised by the hon. Member for Stockton South (Dr Williams) earlier. There are excellent research links with universities all over the world, but it is particularly important that we carry on working with European universities.

Hemel Hempstead Urgent Care Centre

Jim Shannon Excerpts

Tuesday 13th March 2018 Commons Chamber

[Sir Mike Penning]

Thank you, Mr Speaker. I have even longer to pontificate, which is great news.

Justin Dealey acquired an interview with the said Ms Fisher, the chief executive of West Hertfordshire Hospitals NHS Trust. It was quite a long interview, in which Ms Fisher indicated:

“This is a short-term measure which is us acting in the interest of patient safety because, for the next few weeks over the festive period, we are unable to secure GP cover.”

I think most people would understand that, but not if they knew that the GPs were working in the room next door. But that is a separate issue. Justin went on to suggest that surely Ms Fisher understood that local constituents would have real concerns, and asked her whether she would be concerned if she lived in the area. She said:

“I completely understand their concerns, but what I want to reassure the residents of Hemel is that if there were to be any permanent change it would be our absolute intention to include people fully”

in that decision. She went on to say that

“legally we would be obliged to consult for a permanent change of that nature.”

That press release was issued not before Christmas this year but in December 2016. We have had no night provision at all in Hemel since then. Everybody has to go for urgent treatment to Watford A&E. Alternatively, they have to dial 111, which is an excellent service, but after they have been triaged they apparently get sent to Watford A&E. Watford has just come out of special measures, and I praise the work that has been done at the hospital but there is still a lot more to be done.

[Jim Shannon (Strangford) (DUP)]

I thank the right hon. Gentleman for giving way. I sought his permission to intervene on him beforehand. He is outlining very well the issue with the Hemel Hempstead urgent care centre. Does he agree that, although there is immense staffing pressure, closing or scaling back on urgent care units and minor injury units only adds to the pressure on A&Es? There must be more investment in these mid-level centres if we are to prevent the A&Es from crumbling under the weight of the work they have to do.

[Sir Mike Penning]

I clearly agree with my hon. Friend. It was kind of him to come and tell me that he wanted to intervene on me on behalf of other parts of the country that are facing similar pressures.

This was not about money. Normally, when our constituents come to talk to us, especially about the health service, it is about money. They tell us that they are really concerned that there is not enough money to provide the services, but on this occasion we were told that this was nothing to do with money. It was to do with the contractual problem with the GPs. We kept on asking what was going to happen, and then—completely out of the blue and still without consultation—we were told that the Government had said that there should be no more urgent care centres and that they should become urgent treatment centres instead. I was repeatedly told that it was the Government saying that this should be done. I asked whether the Government had said that the centre should not be open 24/7. I was told no, but that we had to move to being an urgent treatment centre. In the past couple of weeks, the unit has changed from being an urgent care centre to being an urgent treatment centre. Interestingly enough, that means that paramedics and nurse practitioners are running the facility, and in many cases—without being rude to our GPs—they have more skills than a basic GP. I have to declare an interest, in that I was a military paramedic, so I am slightly biased about these things.

Was there a consultation before that decision was made, not just to close the UCC but to change to a UTC? No, there was not, even though it is a legal requirement to have one. We are now in a consultation, however. I could not believe it when I first heard this, but I have now heard from several constituents that in the actual meetings that took place—not when people were writing in—when different plans and options were being put to my constituents, a member of the clinical commissioning group staff was at the table trying to convince the public what sort of option they should go for. If we are going to consult the public, surely we should trust them and then have the confidence to listen to them.

What I find really fascinating about what is happening in my part of the world is that people from nowhere near my constituency—from the other side of Watford—are being consulted. They would never come to my facility in a million years—unless they just happen to be in the area—but they apparently have the same rights in this consultation as my constituents, who are again losing facilities hand over fist. Those other views are being taken into consideration because they happen to be part of the trust area. My constituents just scratch their heads and say, “This is illogical.” This facility, even though it is part of the NHS and anybody could come to it, is obviously being used by the largest town in Hertfordshire and the other towns and villages within Dacorum. However, I have no problem with the people of St Albans being consulted over this, because they are clearly part of the process.

Trust has been severely damaged. A highly paid chief executive of an NHS trust went on the radio—telling an MP is one thing, but going public is another—and tells listeners, “This is temporary. Please do not worry; it will all be okay. By the way, if I did actually change the service, that would be illegal because I have not consulted.” Frankly, when they then did not consult—the UCC is quite clearly never going to open again—that breaks the trust.

I have raised the accountability issue in the House before. It is absolutely right that my good friend the Minister on the Front Bench does not make decisions about what A&Es and UCCs are open and how many beds there should be. Those are quite clearly clinical decisions that should be based on knowledge and demand in the area—that is not what happened when our A&E was closed—but we seem to have moved from one extreme to another. I am told that if we want to challenge the consultation, the only way is to put the decision to judicial review based on the consultation. We tried that when the A&E was closed and we got a judicial review. The judge was generous and said, “You have a moral case, but you probably don’t have a clinical case. You don’t have a case in law, because the consultation was done.” However, if the consultation was a complete sham or did not take place at all, where do we go?

I have asked Ministers, I have tabled questions and I have been to see the Secretary of State. At the end of the day, who are these people accountable to? I know that we can go to the health committees at the local council, but they do not have the powers to say that an individual or a trust has brought the NHS into disrepute, and yet that is what has happened here. Nobody was twisting the chief executive’s arm to go on the radio and say what she said. We all listened to it—I got a transcript the following morning—and I sat with Justin and said, “Well, that’s it, Justin. We’re okay.” I was not at all happy about the facility being closed over the 2016 Christmas period, but at least we knew that GPs were going to be recruited and that we were going to get there.

However, the exact opposite has happened. We are not getting the GPs back, and now the facility being open 24 hours a day is only one of the options. I know that the Minister’s notes will say how many people used to go to it at night and so on, but half the problem was that it was never properly promoted. There are access issues at the A&E because so many people are turning up and being triaged when a huge percentage of them do not need to be at an A&E but somewhere else within the NHS. I would argue that they should be at a UCC or UTC or that a GP should come out to them, but that is a separate issue because hardly any GPs make home visits in my constituency.

I know exactly how things work, because I was a Minister for a while and know about the advice that comes down from the trust and the clinical commissioning group, which will say things that are different from what I have said. However, I can honestly say that if there is one issue in my constituency that absolutely unites every political persuasion on my patch, it is the acute health provision in my constituency. We pushed a coffin on a hospital trolley all the way from Hemel Hempstead Hospital to Watford, to indicate that lives would be lost. We had debate after debate with the ambulance service, which said, “Don’t worry, we can get the ambulances there on time.” It probably could, if it rushed them through on a blue light in the middle of the night—if an ambulance was available. Because of the previous Administration’s botching of the regionalisation of the ambulance service, there are often not that many ambulances available, even though the ambulance depot is on my patch.

People do not want to clog up A&E; they want to have the confidence that there is somewhere safe that they and their kids can go for treatment. We have no idea what the conclusion of this retrospective consultation will be. We have no faith that even if the conclusions are in agreement with what we want, we will actually get it. Not all my constituents agree with me, but in a treatment centre I would rather have a highly qualified paramedic nurse practitioner than—I have to choose my words carefully here—an ordinary GP, simply because the paramedic nurse practitioner has so much experience in that area. That is where the modernisation of the health service has been so brilliant. But after telling me that the decision was not about money, it is, frankly, disgusting to sit people down at consultation meetings and try to convince them that it would be better if the centre was not open 24 hours a day.

I hope that the Minister understands how passionate we are about the matter. My constituency is 17 minutes from London and it shares a boundary with yours, Mr Speaker. People in the top part of my constituency all go to Luton and Dunstable—quite rightly so; it is an excellent facility—and those in the bottom part of my constituency, or anyone who comes off the M1 and the M25, end up going to Watford for their acute care.

I want Watford General Hospital to succeed. I think the location of the site is completely ludicrous, and we need a new general hospital for the growing population in our part of the world. I know that you have pressures on housing, Mr Speaker, as we have. But I want the houses, because I want people to have somewhere to live—so many families are struggling at the moment—and if we are to build those houses, we need facilities, such as schools and everything else. When my constituents go to bed at night, they need to know that the urgent care centre is open in case something happens; and that if they cannot cope, we can blue-light them to Watford or to Luton and Dunstable.

I have tried for weeks and weeks to get this Adjournment debate. My hon. Friend the Minister is lucky, because I had been asking for a 60-minute debate in Westminster Hall. We may yet end up there, but that will depend a lot on what he says from the Dispatch Box.

Respite Care for Vulnerable Adults: Teesside

Jim Shannon Excerpts

Monday 12th March 2018 Commons Chamber

[Alex Cunningham (Stockton North) (Lab)]

I am grateful for the opportunity to highlight an issue which is specific to Teesside, but which I am sure will have parallels throughout the country. Let me start with a well-worn quotation:

“If you’re one of those families, if you’re just managing, I want to address you directly. I know you’re working around the clock, I know you’re doing your best, and I know that sometimes life can be a struggle.”

Ministers are probably fed up with Opposition MPs quoting those words spoken by the Prime Minister just 20 months ago, on the steps of Downing Street. We keep mentioning them in many different contexts while we see our communities suffer as the promise that followed fails to meet their needs.

Parents of some of the most vulnerable people in our community believe that there is a respite care crisis in Teesside. No one works harder around the clock, doing their best and struggling to cope and care, than the parents and siblings of vulnerable adults, some of whom have the most complex needs imaginable. Those vulnerable adults, with some of the most extreme personal needs, may be in their 30s, 40s or even 50s, which means that the parents caring for them are in their 50s, 60s or 70s. We as a society owe those parents and carers a huge debt of gratitude. They choose to care for their loved ones at home. They do not hand them over to the state because they cannot cope; they get on with the job. They endure the sleepless nights, they clean up after their family members, and they give them the love and dedication that they need. To be honest, they do not ask for much in return for the huge burden they shoulder on behalf of us all, yet we often let them down by failing to provide the support they need, and on Teesside that appears to many to be getting worse instead of better.

I know that this issue is not exclusive to Teesside, but this evening I want to speak on behalf of the parent carers whose loved ones use the residential provision at Bankfields and Aysgarth on Teesside, and all those families who rely on residential respite care to give them a break from caring and have just a little bit of time for themselves.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing this debate; we have almost an hour and fifteen minutes to speak on the subject, which will be nice. One in 10 people in Northern Ireland are carers, and what the hon. Gentleman is describing is happening in Northern Ireland as well. Does he agree that short-term respite care must be provided to assist in securing the long-term benefit of keeping people in their homes and semi-independent, and that respite care should be offered, and should not have to be begged for?

[Alex Cunningham]

I thank the hon. Gentleman for his intervention, and I agree with him: the longer people are supported to stay at home, the longer they are not an even greater financial burden on the state. I will develop that theme later.

Such is the crisis in health and social care in our country that our NHS commissioners face difficult choices, and families are very worried that they could be facing a substantial cut in the provision offered to them as the local clinical commissioning groups seek to stretch the limited resources they have to meet an increase in demand for support. The CCG for north Tees and Hartlepool and the South Tees CCG are reorganising the way they provide residential respite care. When I met the north Tees chief executive on Friday, she told me of the need to have needs-based services and the plan to review exactly what each individual needs. I know, and so does the Minister, that we must have equity in the system and meet the needs of each individual, and I do not have a problem with that, but, sadly, the review is being interpreted by the families as a cut in provision, with some believing they could lose up to half their respite nights, which they are very anxious about.

I definitely agree that provision should be right to meet the needs of the individual, but this issue is much greater than that: it is also about the needs of the whole family, and perhaps the CCG should have conducted a needs assessment before deciding on the review. In fact, I have always thought that the respite care was very much for the family— an opportunity to take a break from their caring responsibilities, to recharge the batteries and to prepare to resume what they see as their duties.

The CCG has been at pains to stress to me that its proposals do not necessarily mean that there will be a huge reduction in the number of respite nights, but it recognises things will change for some people and is working with families and piloting different ideas to try and improve provision and reassure them. While I think the CCG could have handled this whole business better and understood more comprehensively the issues from the perspective of the families and the various local authority and joint health scrutiny groups who oppose the plans, I cannot say it is its fault.

--- Later in debate ---

[Dr Paul Williams (Stockton South) (Lab)]

I congratulate my hon. Friend the Member for Stockton North (Alex Cunningham) on securing the debate. I also congratulate him on his leadership in this area and on his engagement with the families and the clinical commissioning groups.

The challenge of being a carer for an adult with complex needs is a lifelong challenge. I have enormous respect and admiration for the people who do this work. My grandmother’s sister—I have just worked out that she is my great-aunt—has spent her life looking after several different adults with complex needs. She adopted them as children and has cared for them. I have seen the enormous amount of love and compassion that she has given them, and I have seen in all my constituents who have contacted me, and in my work as a GP in my constituency, the love and compassion that go into looking after adults with complex needs. But this comes at a cost for carers, mainly to their health. They often prioritise the needs of the person they are caring for and do not think about preventing their own ill health problems or about properly looking after problems as they arise. There is also a time cost. Being a carer for an adult with complex needs is a massive time commitment, a money cost and a career cost. So there is huge cost.

[Jim Shannon]

It is also important to get the issue of young carers recorded in Hansard. I have a vibrant young carers association in my constituency, in Regent Street, Newtownards. The work they do with elderly family members is the reason those families are together, so the issue of young carers is so important. Does the hon. Gentleman encounter the same issues I have in my area when it comes to young carers? Does he agree on the importance of keeping families together and of what young carers do?

[Dr Williams]

I thank the hon. Gentleman for highlighting the needs of young carers. In my constituency, as in those of all Members in this House, there are young people who grow up suddenly when they find themselves needing to be carers and who really do hold families together.

In the context of how difficult this caring can be and the tremendous efforts that people make in order to keep their loved ones well and look after them, the provision of occasional respite is the least we should be doing as a society. It is the least we should be doing to say thank you and to sustain the incredible efforts that these people are making. Like my hon. Friend the Member for Stockton North, I give some credit to the two CCGs involved, Hartlepool and Stockton-on-Tees CCG, and South Tees CCG, for taking some responsibility for this. We all see the constant jostling between local authorities and commissioners of health services about who should fund these issues in a time of austerity, but our CCGs have stepped up to the plate and taken ongoing responsibility for funding these issues.

However, a number of constituents have contacted me in what I can only describe as a state of panic during these consultations and since the outcome of the consultations was announced. They are fearful that their much-needed breaks are going to be taken away from them. As my hon. Friend pointed out, their fears may well prove to be ill-founded, but this should not mean that they should be discounted. Change is always difficult for people, but the possibility of services being cut has caused genuine anxiety for these people and we should rightly be recognising it. We all know that caring can be physically demanding, but it can also be mentally demanding, especially if it is being done for long periods of time. Adequate respite is essential if these carers are to be able to maintain their own health and wellbeing. It is also essential that carers are closely involved in any decisions about what is adequate and appropriate for their family members and for themselves. As he has said, a respite package should be designed around the needs of the whole family, not just those of the individual with complex needs.

What we are seeing, though, is limited funding. I do not know whether this is ring-fenced funding that the CCG has or whether it is taken from an overall pot, but there is limited funding. CCGs have a number of conflicting priorities. We know that throughout the health service demand is increasing and outstripping any increase in resource that it has. The limited funding and the rising need for this particular kind of care mean that for some people packages of care are likely to be reduced. That is causing people significant anxiety.

Before I finish, let me say that our experience on Teesside illustrates that health and social care do not exist in isolation from each other. Some small steps have been taken, including by changing the Department of Health’s name to the Department of Health and Social Care, but respite care is a really good example of where some more concrete steps can be taken to bring together health and social care funding. There should be a partnership between local authorities, clinical commissioning groups, parents, carers and the people with complex needs, so that they can work together. Respite care is an issue on which we should be seeing integration at its best. If we are talking about integration, I have to take the opportunity to talk about the forthcoming Green Paper on social care. It is inconceivable for me that in 2018 we should be considering social care in isolation. Will the Department think about whether the Green Paper should really be on health and social care together, rather than just on social care?

I pay tribute again to the carers who have come together to fight for the very best services for their loved ones. They deserve for us to listen, to consider and to act, so that they get the respite services that they need for themselves and their families.

--- Later in debate ---

[Caroline Dinenage]

That will of course be a matter for the Secretary of State, who will deal with it in the appropriate way.

The Care Act also requires local authorities to take a preventive approach to addressing people’s needs in taking steps to intervene early to prevent or delay any worsening of an adult’s need for care and support. This would of course include the carers about whom the hon. Gentleman and his colleagues care so passionately. It is really important to allow carers to take the respite that we have spoken about.

The hon. Gentleman might be interested to know that the Autism Act 2009 requires the Government to have a regularly reviewed autism strategy and to issue guidance to local authorities, NHS bodies, and foundation trusts. In addition, the Children and Families Act 2014 introduced a new statutory framework for children with special educational needs and disabilities. This gives commissioners very clear responsibilities towards those with learning disabilities and autism, including those who may be affected by the review on Teesside.

[Jim Shannon]

I think that everyone in this Chamber will have a knowledge of autism. The Minister will be aware that we have an excellent autism strategy in Northern Ireland, and there is also a very good strategy in Wales. Has she had a chance to check out both those strategies in order perhaps to introduce them, in full, to England?

Childhood Obesity: Bexley

Jim Shannon Excerpts

Tuesday 6th March 2018 Westminster Hall

[David Evennett]

That is a very valid point. Recipes, portion sizes and calories need to be looked at and addressed. I urge all restaurants, fast food outlets and food manufacturers to look seriously at how they can reduce people’s salt, sugar and calorie intake. We have to address that, as I am sure the Minister will accept later.

The statistics for childhood obesity in Bexley are mixed when compared with those for the rest of England. There are areas of public health where we do much better, and I will highlight the stop smoking campaign, which has been very successful across our borough, but unfortunately childhood obesity is a real issue in the borough and needs attention.

It is widely accepted by health experts that once weight is gained, it is difficult to lose. The Government have called childhood obesity

“one of the top public health challenges for this generation”.

That is certainly the case for Bexley. The Government are well aware of the issue nationally and are being proactive in addressing the concerns. The childhood obesity plan in 2016 was a welcome step forward, but plans need to be actioned; we are looking for results and outcomes. Measures in the plan included the soft drinks industry levy, which will apply to manufacturers; a recommitment to the Healthy Start voucher scheme, enabling low-income families to buy fruit and vegetables; and action to increase physical activity in schools. We all appreciate that there is no quick fix, but that is the first step on a long journey that aims to

“significantly reduce England’s rate of childhood obesity within the next ten years.”

We do need an understanding and a culture change.

[Jim Shannon (Strangford) (DUP)]

I thank the right hon. Gentleman for bringing this matter to the House. It is in the news every day—indeed, it is in the news this morning—and it is very important for people back home in Northern Ireland. “Childhood obesity in Bexley” is the heading for this Westminster Hall debate on the Order Paper, but in Northern Ireland we have similar figures—of children aged between two and 15, 17% are classed as overweight and 8% as obese. Does the right hon. Gentleman feel that it is time for the Department for Education and the Department of Health and social care to work together to put in place a strategy to reduce childhood obesity, which would clearly involve schools?

[David Evennett]

I thank the hon. Gentleman for his comments and totally agree with him. I think that the Department for Education and the Department of Health and Social Care are working together, but more needs to be done. I appreciate that this is not just a Bexley issue—it also matters to the people of Northern Ireland and across the country—but I specified Bexley because it is particularly bad compared with other places.

The earlier a child is exposed to obesity, the earlier they can experience medical consequences and problems. In fact, a study by Cancer Research UK found that obesity could cause 670,000 cases of cancer nationally over the next 20 years, plus millions more cases of other diseases, including type 2 diabetes, heart disease and stroke. Obesity and the medical problems stemming from it cause problems for our whole society. It causes a loss of productivity in the workforce. It restricts opportunities for individuals. And it adds another burden on to our NHS. In fact, Cancer Research UK also claims that the cost to the NHS per year by 2035 could be an additional £2.5 billion, over and above what is already spent on obesity-related diseases. Of course, quality of life can also be reduced by being heavily overweight, as that restricts opportunities and choices.

Childhood obesity is strongly linked to adult obesity. According to the Royal College of Paediatrics and Child Health, four in five obese schoolchildren are likely to be dangerously overweight for life. Therefore, we have to act early, before there are serious consequences from something that is avoidable.

I have said that, statistically, Bexley is not performing well, unlike other areas, where provision and action are good. In Bexley, the prevalence of overweight or obesity among children in reception classes is 26.7%. That is worse than in London in general and in England in total. In year 6, the figure in Bexley increases to 39.4%, which is almost one percentage point higher than the London average and more than five percentage points higher than the England average. That is very disappointing. When we consider that in Bexley 12.3% of reception age children and 24% of year 6 children are obese, it is a real cause for concern. Let us look at the trends over time. The number of overweight or obese reception age children in Bexley increased from 20% in 2007 to 26.7% last year. That is why we are raising this issue today with the Minister—to highlight the issues that we have in Bexley.

Diets, of course, play a very important role in lifestyle. Approximately 54% of adults in Bexley meet the “five a day” recommendation for fruit and vegetables. Again, that percentage is below the London and national averages. It does not set a good example for our children. Sadly, children do follow their parents and grandparents, and when habits are formed young, the consequences are great. We need to promote and pursue the importance of fruit and vegetables. Fruit can be an enjoyable snack and an alternative to chocolate, cake and sweets, while a diversity of vegetables is essential to a balanced diet.

Bexley Council—a good, Conservative-led council—is taking action. Just over a year ago, Bexley joined the nationwide Sugar Smart campaign led by Jamie Oliver. The aims of the campaign for us are to educate people and raise awareness across Bexley about the harmful effects of excess sugar consumption, and to reduce individuals’ sugar intake across the borough. The council is encouraging local organisations and businesses to participate in the campaign and support this very important initiative. Bexley has now signed up to the campaign 16 participants, including a number of schools, and I hope that the figure continues to grow during the rest of this year, because that is a very important facility and opportunity.

I am grateful for the information that has been given to me by Dr Anjan Ghosh, who is the director of public health and deputy director of health and wellbeing at the London Borough of Bexley. Dr Ghosh advises that the Bexley health and wellbeing board recently signed off on the development of a system-wide prevention strategy that is far reaching and ambitious in scope and has the potential to harness council, NHS and community assets in improving health and wellbeing outcomes, helping Bexley residents to start well, live well and age well. The strategy is currently in development, and part of that involves developing an obesity strategy for Bexley that has the same population health focus.

Part of the work is to unpick why obesity statistics in Bexley are poor compared with statistically and demographically similar London boroughs. The programme includes a two-tier child weight management programme for children aged four to 11 and their families, a family lifestyle programme and guidance to support healthier living, eating and lifestyles. Each category programme is designed specifically to provide age-appropriate messages, activities and behavioural change that will benefit the whole family. Once the 12-week programme is over, there will still be access for the families and young people to drop in, to update themselves and take the service further.

I know that schools and teachers are doing their very best to advise children, as well as to educate and support them to eat well. However, parents, as the primary educators, have primary responsibility and we need more support from parents. The scale of the issue is huge. I will not go through the statistics of how many biscuits, cakes, ice-creams and all those type of foods are consumed by young people every year, or how many calories those foods and fizzy drinks contain.

One has to say that it is a worry to see secondary school children coming out of school in the afternoon into Bexleyheath, going to the fast food outlets in the town and consuming burgers and chips, which have an enormous calorie intake. That is a huge concern. There has been an increase in our borough of waffle shops, ice cream parlours and other fast-food outlets. While it is good to see business thriving, it is worrying that some are exacerbating the problem and increasing the sugar and calorie intake of our youngsters. Treats are fine for special occasions, but should not be the mainstay of an individual’s diet. I am not a killjoy, but everything should be in moderation. In addition, I think that many of us eat too much and have portions that are too large. That is why the report I have highlighted this morning is so important.

[Jim Shannon]

Further to that point, on the news this morning they were saying that they were not against the idea of fast-food outlets, but we should have smaller portions. In other words, if we start with smaller portions, it will be a step in the right direction and maybe that is the way to go forward.

[David Evennett]

I think that is absolutely right. The hon. Gentleman highlights the calorie content and intake, which is so important.

I also want to highlight physical activity, or inactivity, which is a huge problem that can lead to obesity and is the fourth leading cause of global mortality. Increasing activity levels could help to prevent a number of illnesses, including cancer and diabetes. Regrettably, in Bexley, over 21% of adults are physically inactive.

I was honoured and privileged to serve as Sports Minister in the then Department for Culture, Media and Sport for the first half of 2016, while covering the maternity leave of my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch). It was a brilliant experience to go around the country and see first-hand how sport can make a real, positive impact on people’s lives. We must promote the wide range of sports available out there and their benefits. Sports participation is a great way for young people in particular to become physically active, improve their health and fitness, and—depending on the sport—to be part of a team, socialise and be part of something, gain motivation and confidence, and also have fun. We all know that sport is fun.

I know that the Minister will agree with me on that. I used to be a keen tennis player. I do not get time for that now, but I am still a keen walker. We have places such as Hall Place and Danson Park in our borough, where one can have a good walk. It is a really invigorating experience. I also enjoy going to north Norfolk and Sheringham Park with my wife, Marilyn, and we have long walks along the north Norfolk coast. That is important exercise.

In conclusion, we must take action on all fronts. The concern is not only the advertising and promotion—in supermarkets we still see the calorie-laden chocolates and what have you by the check-out, which is a worry too—but what parents are feeding their children and the fast foods. The intake of sugar and salt is too high. The issue is people making sensible lifestyle choices, to ensure that they are eating healthily and looking after their health. I know that my hon. Friend the Minister is aware of the serious issues across the country. Government, industry, schools, the NHS, families and friends all have a part to play to ensure that we are eating and living healthily.

The benefits of reducing childhood obesity are clear. It will save lives, but it will improve the quality of young people’s lives, which is important. Education is the key. We need to educate our children and businesses. We need to encourage everyone to be more active and eat better. We need more promotion of sports and to continue to reduce children’s calorie and sugar intake. We need to educate parents and grandparents on the risks of lifestyle to themselves and their families. Of course, publicity and promotion are important, essential in fact. Politicians at local and national level should get on board too and need to be engaged to achieve results. For our Borough of Bexley, we need results. I look to my hon. Friend the Minister, who I know well, to take these matters seriously and give us the lead.

NHS Wholly Owned Subsidiary Companies

Jim Shannon Excerpts

Tuesday 6th March 2018 Westminster Hall

[Liz Twist]

I most certainly do agree with my hon. Friend. We know that NHS trusts are under incredible financial pressure and are looking for ways to stretch the available funds. Some trusts have seen wholly owned subsidiaries as a way of reducing costs. Those trusts include the Gateshead Health NHS Foundation Trust, which provides excellent hospital services to many of my constituents.

The cost savings come about in two main ways: through saving VAT and by saving on staffing costs. For some, there may be a third area of income—advising other NHS trusts on going down the same path, which is one of the reasons why they are spreading across the country. In November 2017, the then Health Minister, the hon. Member for Ludlow (Mr Dunne), stated that:

“NHS Improvement is aware of 39 subsidiaries consolidated within the accounts of foundation trusts”—[Official Report, 14 November 2017; Vol. 631, c. 129.]

We know that more are being created even now.

[Jim Shannon (Strangford) (DUP)]

The issue of pensions is very much at the forefront of the minds of myself and others in this House. Does the hon. Lady agree that it is essential that staff working through the front door of the NHS or the back door of the wholly owned subsidiary company must be entitled to retain their NHS pension? Any attack on the pension scheme must be wholly rejected and the trusts must all be made to understand the position on pensions when these types of actions are taking place.

[Liz Twist]

I most certainly do agree, not just for pensions but also for terms and conditions.

What is the problem with these companies? First, it is that they come at a price, which for the most part is met by the staff who work for them. Secondly, the VAT saved by trusts with these companies is not new money coming into the NHS—the money that trusts save will be lost elsewhere in public services. Already, the Department of Health and Social Care has reminded trusts by letter that they should not engage in any activities that may be construed as tax avoidance, and the loophole could be closed in the future. Thirdly, the establishment of wholly owned subsidiaries leaves the services open to privatisation in the future, continuing the fragmentation of our NHS.