BAME Blood, Stem Cell and Organ Donation

Jim Shannon Excerpts

Wednesday 27th June 2018 Westminster Hall

[Mohammad Yasin]

My hon. Friend makes a very important point.

In November, Poonam’s fundraising efforts were recognised when she was awarded individual fundraiser of the year. I was so inspired by her story that I wanted to help raise awareness of the issue in BAME communities, because none of us know whether we or one of our loved ones might be a name on that list in need of a match, desperately waiting for a lifesaving opportunity. The reality is that many patients will not receive the stem cell transplant they need, because either there is no donor available or a donor cannot be found quickly enough. Only 20% of BAME patients receive the best possible match, compared with 69% of white, northern European patients.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this matter forward. I have always supported the issue of organ transplants, including for BAME people. With only six out of every 100 people who have signed up to the NHS organ donor register having told us that they are from black, Asian or minority ethnic communities, does the hon. Gentleman feel as I feel that when it comes to organ donation, every race is needed and we should urge the Minister to respond with a focused campaign for BAME donation? That is the best way forward and I think the Minister needs to do that.

[Mohammad Yasin]

I agree with the hon. Gentleman’s point. The disparity urgently needs to be addressed and I therefore welcome the very timely review by my hon. Friend the Member for Wolverhampton South West (Eleanor Smith) on BAME stem cell and organ donation.

The problem of insufficient blood, stem cell and organ donation is fundamentally one of supply and demand. According to the review, fewer than 5% of donors who gave blood in the past year were from BAME communities, although the BAME group makes up around 14% of the total UK population. Currently, only 1% of people who give blood in England are black. BAME people are unequally affected by that, as they are subject to a higher demand and shorter supply than other groups. The most common blood diseases that affect BAME communities are thalassaemia and sickle cell disease.

Phenylketonuria: Treatment and Support

Jim Shannon Excerpts

Tuesday 26th June 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairmanship, Mr Robertson. I congratulate the hon. Member for Blaydon (Liz Twist) on bringing this debate. I also congratulate the hon. Member for Chelmsford (Vicky Ford) on her work in the past and on bringing her Adjournment debate to the House, which I supported.

I am the Democratic Unionist party health spokesperson, so it is important to be heard on this issue, which grossly affects people in Northern Ireland, as well as in the Republic of Ireland. Not many people know this, as Michael Caine always says, but there is a higher per capita prevalence of PKU in Northern Ireland than in the rest of the UK. In fact, one in 4,000 people in Northern Ireland has this condition, compared to one in 12,000 in England.

[Mr Gregory Campbell (East Londonderry) (DUP)]

Given the higher incidence in Northern Ireland, but also instances across the United Kingdom, does my hon. Friend agree that that it is imperative for the Minister, and all health Departments across the UK under the devolution settlement, to ensure that the best possible treatment and support is given to PKU sufferers and their families?

[Jim Shannon]

My hon. Friend is absolutely right. We always look to the Minister for support on these issues, and he is always very forthcoming, so we look to him again with that in mind. It is clear that this condition affects my constituents and those of everyone else who is speaking today.

PKU is usually diagnosed shortly after birth by the heel test. Many women can tell us that when the heel prick is done and they hear their child crying in the hands of the midwife, their automatic reaction is to reach out and grab the child. That test is so important at a very early stage. For those families who receive a diagnosis of PKU, however, the pain begins when they realise just what that means.

People with PKU have a faulty version of the enzyme that breaks down the amino acid phenylalanine, a component of protein. Untreated, it can cause brain damage when it builds up in the blood and brain. Untreated PKU causes profound and irreversible intellectual disability, seizures and behavioural problems. The damage is not reversible, so early diagnosis and early consistent treatment is vital. That is why, in 1969, we added this test to the routine blood test at birth. Some people here were not born then; I was just a young child.

The only treatment for PKU that is currently funded by the NHS is a very restrictive diet. I am a type 2 diabetic, so I understand a wee bit what it means to be careful with what I eat. I know that if I had a wee bit of honey with my toast this morning, I probably should not have done, but by and large I know what I have to do, and what I can and cannot eat. For those with PKU it is much more difficult, and the restriction is great. Most sources of protein are removed from the diet to prevent brain damage.

I want to give a few quotes from the parents of PKU sufferers, so that we can understand a bit better the life lived by those with this disorder. One parent said:

“The low protein prescription breads and pastas give her stomach ache—another reason she refuses to eat them.”

A parent whose daughter has PKU said:

“My daughter struggles with drink supplements as they all upset her tummy so she has to take 50 tablets per day.”

Another parent said:

“PKU causes arguments between us. My husband and I have suffered with stress, we argue about the management of her diet. I had hoped after 12 years things would get easier but this diet is met with anger, frustration, resistance and annoyance all aimed at me.”

The hon. Member for Dudley North (Ian Austin) already referred to the following case, but it is worth repeating simply because of its importance. One parent said that her daughter cannot normally eat, adding,

“she will ask to eat crumbs of normal bread off our plates or we catch her licking our plates.”

That is the impact PKU has on some children and their families. That is why parents throughout the UK are demanding that more be done. We look to the Minister to see if more can be done through his office. If there is something to help these people, we must make it available. We all know what must be made available: Kuvan. We all know what it can do. One young girl took a one-month trial of Kuvan and could eat a normal vegetarian diet. She had more energy, her mood lifted, her nightmares stopped and she could do ordinary activities at home and at school. What a difference it made to the child’s quality of life, and that of the entire family!

I have read that the cost of Kuvan is on average £14,535 for a child and £43,597 for an adult, based on list pricing. The pharmaceutical company BioMarin has publicly stated its willingness to offer substantial discounts in a deal with the NHS. I am asking the Minister, as other Members have done, to broker that deal, and enter into meaningful discussions on providing the medication, as the High Court ruling has said that we should. I urge the Minister to instruct his Department to find a way of making this available, rather than simply checking a box.

In conclusion, I ask that no parent be forced into this situation when there is something available to prevent it. I stand with the PKU sufferers of Strangford, Northern Ireland and the whole of the United Kingdom of Great Britain and Northern Ireland.

Childhood Obesity Strategy: Chapter 2

Jim Shannon Excerpts

Monday 25th June 2018 Commons Chamber

[Steve Brine]

Especially tennis, Mr Speaker. I know my hon. Friend is keen on social prescribing, as am I. I recently signed an accord between National Parks England and Public Health England to use the brilliant natural resource of our national parks. They are clearly part of the social prescribing mix that we increasingly see across our country, and I want to see more of it. She is right to raise that.

[Jim Shannon (Strangford) (DUP)]

I, too, thank the Minister for his statement. With 25% of children overweight in Northern Ireland, will he confirm how he intends to work cross-departmentally there in the absence of a working devolved Assembly? We need a strategy that works for all of the United Kingdom of Great Britain and Northern Ireland.

[Steve Brine]

Yes. Some of the measures in this strategy relate to reserved matters, such as the advertising proposals that I have spoken about. I have been speaking to my officials, who are already talking to officials in Stormont and will be helping them to develop their own plans. I know they have been very interested in what we are doing, and I hope they can copy and follow some of this locally.

ME: Treatment and Research

Jim Shannon Excerpts

Thursday 21st June 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate. I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on advancing a comprehensive and compassionate case on behalf of ME sufferers and I congratulate her on encapsulating the issues so well. Her constituents will be very proud of her; she can be assured of that.

As someone who has had the opportunity to speak on behalf of ME sufferers over the years, before I came here in 2010, one frustration of my former life as a councillor and as a Member of the Northern Ireland Assembly was that if I put “ME” on a disability living allowance form, as it was then, that I was filling in for a constituent, and went to the GP and said, “I need a wee letter to support this person who has ME”, they would say, “They have what?”, and I would have to explain. That is in the past now, thank goodness, and I can honestly say that in the past few years there has been a better understanding from GPs and doctors in my constituency. They have come round from not understanding ME to understanding it, so when someone needs a form to be filled in, it is filled in right; if they need a support letter, that happens too. That is very important.

It was my pleasure to support the hon. Member for Glasgow North West at the Backbench Business Committee, so I wanted to make a contribution today.

[Carol Monaghan]

I should have paid tribute to all hon. Members who supported my application for the debate, and who came along to make representations to the Backbench Business Committee, like the hon. Gentleman. I see several of them present, and I thank them.

[Jim Shannon]

We are always very pleased to support the hon. Lady’s proposals to the Backbench Business Committee.

This is an emotive issue. Many constituents have contacted me in anger, frustration and hurt as they simply feel that their illness is not understood and that successive Governments and some in the Department of Health and Social Care have shown no desire to gain an understanding—I say that respectfully, and I understand that some might say that healthcare is devolved. That is not the case for everyone, but it is certainly how many of my constituents have said that they feel.

We are fortunate to have a Minister who has a deep interest in this subject matter. He is in deep conversation with his Parliamentary Private Secretary, the hon. Member for South Suffolk (James Cartlidge), at the moment, but I am sure he will turn round shortly and be aware of my contribution. I am sure that he will respond constructively.

I want to thank MEAction, Action for ME, the ME Association, the ME Trust, Blue Ribbon for the Awareness of ME, the Centre for Welfare Reform, Forward-ME, ME Research UK, the Welsh Association of ME and CFS Support and Hope 4 ME Fibro NI in particular. All those organisations—there are lots of them—have furnished us with lots of information, and I thank them. I particularly thank one constituent, Sally Burch, who ensured that I had all the details and information to help me. She comes to see me regularly and fills me in on all the details.

ME is a chronic fluctuating neurological condition that causes symptoms that physically affect many bodily systems, commonly the nervous and immune systems, and affects an estimated 250,000 adults and children in the UK, as other hon. Members have said—it is not just an illness in adults. Approximately 7,000 people in Northern Ireland and about 17 million people worldwide have ME.

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

The hon. Gentleman is right to raise the issue of children with ME. It has an impact on their education because of the lack of access to consistently available home education where that is necessary. Does he agree that the Minister may want to take that up with his colleagues in the Department for Education?

--- Later in debate ---

[Jim Shannon]

I thank the hon. Lady for her intervention, which gives me a chance to say that I have constituents who have had to be home-schooled for the simple reason that they have ME. I am aware that the illness affects not just adults, but children, and I have seen the effect on their education as well.

Very few of the hospital-based ME services provide a domiciliary service for people who are unable to attend an out-patient department. There is now only one hospital service that has dedicated in-patient beds for the assessment and management of people who require hospital admission to a ward where staff have experience in dealing with the condition.

Specialist services for ME are scarce and under-resourced, as many hon. Members have said. I am ashamed to say that in Northern Ireland, my home nation, there are no services, which makes it all the worse. We have a non-functioning Assembly, as many hon. Members will know, which means that trying to initiate something is even more difficult now than in the past. The only way to get the attention and dedication that is needed to treat ME is to ensure that it is correctly classified, which has not happened so far.

The briefing I received provided so much information that it would be impossible to go into all the details in the short time that I have available, and I will not try to do that, but I will highlight the problem of the 2007 PACE trial that my constituents raised with me. In 2007, NICE recommended graded exercise therapy and cognitive behavioural therapy for patients with ME. That guideline was based on weak evidence from small trials, so the much larger PACE trial was designed as a definitive test of such therapies. It cost some £5 million and was funded mostly by the Medical Research Council, with, uniquely, some funding from the Department for Work and Pensions. PACE researchers reported that with cognitive behavioural therapy and graded exercise therapy approximately 60% of patients improved and 22% recovered. The treatments were claimed to be moderately effective and safe.

However, PACE’s claims ran counter to patients’ knowledge and lived experience. My constituents told me that that was not how it really was. That led some to examine the trial’s methods, and they found two considerable problems. First, the objective results were poor. After a year of therapy, the graded exercise therapy group’s increase in walking speed was less than half that achieved in three weeks by a sample of class II chronic heart failure patients receiving graded exercise. The trials were suspect before we even got the information.

Secondly, after the trial had finished, the PACE authors lowered the threshold they used as the definition of improvement—it was as if they had taken the figures and manipulated them to get what they wanted. That inflated the number of participants who were classed as recovered or improved. In some cases, even patients whose condition had deteriorated during the trial were classed as recovered. I believe in miracles—I know they happen—but that was not one of them, because people had not recovered.

After spending more than £200,000 fighting a freedom of information request, Queen Mary University of London, PACE’s data custodian, had to share access to the data. Subsequent re-analyses have shown that changes to the criteria for recovery and improvement distorted the results.

All that was highlighted to me during a constituency meeting with Sally Burch and other ME sufferers, including a wonderfully intelligent constituent of mine who had noted the questions that I had asked at Westminster and the letters that I had written to the Minister about the trial. She explained her day-to-day life. I knew her day-to-day life as a healthy person, so now that she was not, I could clearly see the difference. She said that her treatment and care are not acceptable.

Hope 4 ME Fibro NI, of which many of my constituents are members, underlined its opinion on the need for ME inclusion in the medical curriculum after the charity hosted an ME educational event on 24 May at Queen’s University Belfast, which nearly 400 medical students attended, as did many lecturers. They all have the same interest in ME: how we go forward, what the PACE trial did and whether it helps us. If it does not help us, let us highlight that. The results of the charity’s questionnaire are revealing and clearly demonstrate the desperate need for ME to be included in the medical curriculum. Other hon. Members have spoken and will speak about the need for research. We are looking for many answers, as always, but if there was one particular issue that we were looking for help with, it would be the research. Perhaps the Minister will give us the encouragement that we need in his response.

ME is a serious illness, which seriously affects so many in our communities. These people are not lazy and they must not be made to feel like that. To say to an ME sufferer, “Get up and have a walk. You will be fine,” is tantamount to saying to someone with a bullet in his leg, “Stick a plaster on it, ignore the blood flowing down and soldier on.” We must send the message that that does not work and is not helpful. We in this place must ensure that diagnosis and care are appropriate, which is not the current situation, so I fully support the calls of the hon. Member for Glasgow North West.

On behalf of my constituents, and all constituents across the United Kingdom of Great Britain and Northern Ireland, I am asking not simply for words of understanding from the Minister, but for action to be taken to change the “Get up and get on with it” mentality to an “I will help you to get up and get on with it, and find a way to facilitate an easier way of living your life” mentality.

In this debate, we want to highlight ME and show what the problems are. We look to the Minister for action; we need his help to make it happen. We need something practical that can and will help, and that will give encouragement to our constituents and to all ME sufferers across this great nation of the United Kingdom of Great Britain and Northern Ireland.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 19th June 2018 Commons Chamber

[Mr Hunt]

I congratulate the last Labour Government on introducing direct payments, which were the first step in this process. The hon. Lady talks about cuts in social care, which I acknowledge, but, with respect to her, she never talks about the reason, which was that in 2008 we had the worst financial crisis in our peacetime history, and we had to take measures. It is as a result of creating 3.2 million jobs since then that funding for social care is now going up.

[Jim Shannon (Strangford) (DUP)]

Bearing in mind that the number of bed days lost increased in the second quarter of 2017-18, with most of the patients subject to delays being elderly people, will the Minister outline a dedicated strategy for getting people out of hospital and back home with appropriate care as a matter of urgency, for the good of the patient as well as the public purse?

[Mr Hunt]

This is a huge challenge in all parts of the United Kingdom. In England, about 22% of bed days are occupied by people who have been in hospital for more than three weeks, and probably less than 20% of those people should be in hospital. We are taking urgent steps to rectify that, because it is very, very bad for the patients involved.

Complex Regional Pain Syndrome

Jim Shannon Excerpts

Tuesday 19th June 2018 Commons Chamber

[Ruth George]

I thank the hon. Gentleman for his intervention. While we can listen to descriptions of the pain, we can never really have any idea of what it is like. The worst thing about CRPS is that the pain is not occasional and something that a person knows will get better—they know it may be with them for the rest of their life.

[Jim Shannon (Strangford) (DUP)]

I sought the hon. Lady’s permission to make an intervention before the debate.

Whenever I say in my office that I am in pain, my girls say to me, “You don’t know what pain is. If you had given birth, you would know what pain is.” The girls in my office tell me that chronic regional pain syndrome is even more painful than labour and giving birth, so I understand just how extreme it is.

We look to the Minister for support and help, as we always do—and we always get it, by the way. Does the hon. Member for High Peak (Ruth George) agree there is an onus on GPs to be more aware of the illness and to see how they can provide help in their surgeries? The Minister can give some direction to the NHS as a wee bit more needs to be done in surgeries and health clinics.

[Ruth George]

I thank the hon. Gentleman for his intervention, and I know that he has made inquiries and asked questions about CRPS over the years. All the sufferers thank every MP who raises the issue and helps them to feel that they have hope.

Apart from the physical and mental pain suffered due to CRPS, a severe part of the torture that my constituent Victoria experienced was the judgmental attitudes of medical professionals who did not understand or were not aware of the condition and the shame that she felt. She says, “The medical profession sometimes don’t believe your symptoms, or try to fob you off by saying, ‘Are you sure it is not in your head?’ or, ‘You look well. Are you sure you’re actually ill?’” Those problems are even worse now that we see children being diagnosed with CRPS, because children are often not believed when they say that they are in excruciating pain.

NHS Long-Term Plan

Jim Shannon Excerpts

Monday 18th June 2018 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I very much welcome the Secretary of State’s statement. I congratulate him on staying the course, and on his perseverance and dedication. I say very well done. It has been indicated that the Northern Ireland Department of Health will also benefit over the next few years. What discussions have taken place with the Northern Ireland Department of Health to ascertain the monies to be allocated, and the focus and priorities?

[Mr Hunt]

This is, as the hon. Gentleman knows, a devolved matter, but I would say that England, Scotland, Wales and Northern Ireland are all on the same journey when it comes to the NHS. We are all moving to integrated out-of-hospital care built around the person and focused on prevention. In one respect, Northern Ireland has gone further faster than anywhere in the UK: I refer to the integration of the health and social care systems. There is plenty we can learn from them and they from us.

Acquired Brain Injury

Jim Shannon Excerpts

Monday 18th June 2018 Commons Chamber

[Steve Brine]

I thank my hon. Friend, who has professional experience of the criminal justice system. I shall come to his point in a moment, but I thank him for putting it on the record. Sometimes it is a difficult subject to talk about, but it is very relevant.

[Jim Shannon (Strangford) (DUP)]

This debate is important to me personally; many years ago my brother had a serious brain injury as a result of racing motorbikes. That made an independent, single-minded person into someone who depended very much on others; it took him from being a person with his own business and social connections to being someone who could not co-ordinate more than one thing at a time.

I look forward to some comfort in the Minister’s response, which I know we will get. We need not only help for the person in an institution; they need to be taken home and given a semblance of order in their lives and what quality of life is possible. Does the Minister accept that families need help to take on that job for someone whom they love and want to help?

[Madam Deputy Speaker (Dame Eleanor Laing)]

Order. Before the Minister responds, I should say that I appreciate that many want to make interventions because they do not want to stay until the end of the debate. We have only an hour and 10 minutes. A lot of people wish to make speeches and there will have to be a time limit. Interventions must be short.

Terminal Illnesses: Continuing Healthcare

Jim Shannon Excerpts

Wednesday 13th June 2018 Westminster Hall

[Chris Evans (Islwyn) (Lab/Co-op)]

I beg to move,

That this House has considered the Government’s policy on continuing healthcare for people with terminal illnesses.

It is a pleasure to serve under your chairmanship, Ms McDonagh, in this important debate this afternoon.

I rise to speak today as a member of the Public Accounts Committee, which in November last year held an inquiry into the National Audit Office’s report on NHS continuing healthcare funding. Although this particular issue concerns health policy in England and I am, of course, an MP for a Welsh constituency—you can probably tell that from my accent, Ms McDonagh—I secured this debate in my capacity as the secretary for the all-party parliamentary group on motor neurone disease, in which I have worked closely with the Continuing Healthcare Alliance, an organisation comprised of 17 different charities, including the Motor Neurone Disease Association and Parkinson’s UK.

Many of those charities’ long-held concerns were addressed in both the NAO report and the PAC inquiry, and we were all hopeful that the Government would finally address the many issues surrounding continuing healthcare, and rectify them to make the lives of those who suffer from ongoing or terminal illnesses that little bit easier. However, I am saddened to be standing here today to say that, judging by the Government’s response to the PAC report, that was wishful thinking. The PAC set out a number of recommendations for the Government with regard to continuing healthcare, which the Government have yet to fully take on board. That is disappointing, but unfortunately—I am sad to say—not surprising.

One of the key issues highlighted by the NAO and the PAC was how the clinical commissioning groups—CCGs for short; they are responsible for administering and approving eligibility for continuing healthcare—are not being held to account for delays in assessments and eligibility decisions. In 2015 and 2016, a third of patients had to wait for longer than 28 days for a decision on their eligibility for continuing healthcare. The Government said in their response to the PAC report that 80% of assessments are conducted within 28 days, and that they will regularly monitor the effectiveness of the assessment procedure. That percentage—80%—sounds huge, but I wonder and worry about the other 20% of patients who are not receiving such assessments.

However, the NAO report demonstrated that existing mechanisms are not effective in addressing CCG performance. Across the CCGs, the percentage of patients judged as eligible for continuing healthcare, or CHC, ranged from 41% to 86%, which suggests there are differences in the way each CCG interprets the national framework for eligibility. The Government are yet to address this variance and provide more concrete proposals for changes to the process.

What is more, the Government seem more concerned with hitting the 28-day decision target rather than with assessing whether judgments are accurate and in line with the national framework. They must be careful to ensure that the quality and accuracy of decisions are not compromised by the drive to meet targets. Although it is important to ensure that patients are not kept waiting too long for a decision on their eligibility, we must make sure that those in need of help are not deemed ineligible, so as to hit waiting time targets.

The PAC also recommended that the NHS and the Department of Health and Social Care do more to raise awareness of the availability of CHC among patients, their families, and health and social care specialists. According to the CHC Alliance, two thirds of people do not find out about CHC until very late in their journey in the health and social care system. Furthermore, a 2016 survey of MND patients found that although 30% of respondents were receiving CHC, 33% were not aware that it existed. As many will know, motor neurone disease is particularly cruel; most people who are diagnosed will pass away within 18 months of diagnosis.

The Committee asked the Government to update it on how awareness of CHC has been raised among the relevant groups. The Government have said they will carry out joint work with the NHS to understand awareness gaps and how the process for determining CHC eligibility is understood, with a plan of action ready by summer 2018. As of this month, June, patient organisations are still waiting to be approached regarding levels of CHC awareness.

Another area in which the Committee required more clarification from the Government was on how they plan to improve the quality of the assessment tools and staff and assessor training. The Committee has also asked the Government to be clear on how they plan to monitor the impact of changes in reducing variations in eligibility rates between CCGs. Rather than give a detailed response, the Government instead chose to refer to the recent changes made to the national framework. They also said they would carry out the work providing more insight into CCG variations by autumn 2018, but it remains to be seen whether they will keep to that deadline.

The CHC Alliance has reservations about the changes. The eligibility assessment tools include the decision support tool, which is a checklist for eligibility. That tool lies at the root of the eligibility issues with CHC, yet only minor cosmetic changes have been made to it. There are also issues with the definitions of severe and priority conditions in some care domains. They can lead to the impression that CHC eligibility is for terminally or morbidly ill patients only, which is simply not the case. Such misinterpretations of the framework contribute to the very low conversion rate between the checklist and those receiving eligibility. The rate was only 29% across 2015 and 2016, according to the NAO report.

There are further concerns surrounding the Government’s proposals to stop CHC eligibility decisions being made in acute or specialised hospitals. That will seriously disadvantage those patients in need of long-term care in such settings. For example, a spinal injury patient in a specialised spinal hospital could be at risk of losing out on CHC funding if the Government choose to remove eligibility assessments and decisions from those institutions. I urge the Government to seriously reconsider that proposal, as it does nothing to help those in desperate need of CHC funding and causes unnecessary worry and concern for their families, friends and carers.

I mentioned the inconsistency of approval rates for eligibility across CCGs. The Committee recommended that the NHS should establish some sort of oversight process to ensure that eligibility decisions are made consistently within and across CCGs, as well as setting out criteria to identify and investigate outliers in eligibility decisions so as to generate a greater understanding of the variance in eligibility outcomes.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing this debate. There is no guiding framework for continuing healthcare in Northern Ireland, which makes getting a CHC assessment particularly challenging. It is unlikely to be offered or mentioned by someone’s local health or social care team, but it is definitely available. Does the hon. Gentleman agree that we need a UK-wide change in how CHC is managed for those who are terminally ill, instead of expecting phenomenal charities such as Macmillan to stand in the breach?

[Chris Evans]

I thank the hon. Gentleman for his intervention; he is always insightful. My experience is the same as his. Most people do not know about CHC. That is not just an issue for the Northern Irish, Scottish or Welsh Governments or whoever; it is a UK-wide issue. We are dealing with people who are near the end of their time on this earth, and we have a duty not just as politicians, but as human beings, to ensure that their time is as comfortable as humanly possible. I think the whole House would support us on that.

The Government’s response has been to try to dodge responsibility by saying that the NHS already has assurance mechanisms to hold non-compliant CCGs to account. Those are mechanisms that the NAO report demonstrated are not effective in eliminating unwarranted variation when it comes to eligibility decisions. The NHS has not been addressing CCGs’ non-compliance with the national framework. The Government need to help and encourage them to do so to ensure that accurate decisions are made and that people in need of help are not left struggling without it.

Perhaps most concerning of all, there has been little substantive stakeholder engagement with patient organisations representing those affected by inconsistencies and variation in eligibility outcomes. In my discussions with a range of organisations, that is the No. 1 problem. They do not believe they have been asked what they think of how the present system is working. The Government did not lead a full public consultation for the national framework revision, and the closed engagement process has left patient groups feeling unhappy, ignored and out of the loop. The revision was conducted over a very short period, with a very select group of consultees. It is little wonder that the changes made to the framework are so unsatisfactory given that those in receipt of care have not been consulted on what changes need to be made.

All the pledges to improve the framework and the eligibility process mean nothing if the changes are not properly funded, so it was disappointing to see the Government provide such a vague breakdown of the costing of efficiency savings in their response to the PAC inquiry. They expect to reduce spending by £855 million, yet no details are provided as to how those large cost savings will be achieved without limiting either eligibility or the support provided. The Government believe they can save £122 million by improving the commissioning of care packages and a further £293 million by allowing CCGs to locally deliver improvement initiatives. However, those savings in practice may refer to cuts to care packages. We need further assurance from the Government that care packages and support will not be sacrificed to save money. Sometimes, there are issues wider than saving money.

Overall, the Government’s response to the NAO report and the Committee inquiry is disappointing and lacklustre. As with many aspects of the Government’s health policy, it seems that they view the revisions to the framework as a money-saving project, rather than considering the detrimental impacts the changes may have on the patients and their families who are in desperate need of CHC funding. It feels as though the Government have learned nothing from the report and have taken none of the recommendations on board. I am sad to say that that seems typical of the Government in so many areas.

The response was not good enough. Further clarity is needed on the issues. I have mentioned that the changes need to be set in concrete. Through my role on the all-party parliamentary group for MND, I have met several MND patients. I have to pay tribute to the bravery of those who are suffering with MND, as well as their families. I pay tribute to their passion to help others. If anyone wants to see humanity in action, I ask them to go along to a Motor Neurone Disease Association meeting. What strikes me is that it is not about them or the sufferer; it is about the people who come after them.

All my life, I have counted myself as a socialist in the belief that I have as much responsibility for the person sitting next to me as I have for myself. I honestly believe that I see that all the time in the Motor Neurone Disease Association. I can only pay tribute to those people from the bottom of my heart for the work they do for families and for carers. Even after the ones they loved have gone, there are still people out there fighting for those with MND. I know the Minister is compassionate; I have often been very impressed with her work in this Department and as a Minister for Justice in a previous life, and I know she cares. I hope that today she will show that the Government she represents really care about these people.

Hepatitis C

Jim Shannon Excerpts

Tuesday 12th June 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

Let me express special thanks to the hon. Member for Southend West (Sir David Amess) for setting the scene. He said that he was not the master of the debate, but he was certainly the master of delivery. He told us about all the important issues, with the help of the two learned doctors in Westminster Hall today: the hon. Members for Central Suffolk and North Ipswich (Dr Poulter) and for Central Ayrshire (Dr Whitford).

As my party’s spokesperson on health, I take an interest in all health matters in the House. Some people would say, “He takes an interest in just about everything in the House,” but that is by the bye. Health matters are my specific interest, so I am here to make a contribution in that capacity and will make a comment from a Northern Ireland perspective. Obviously, that will come into the debate.

First, I commend the all-party parliamentary group on liver health for the report that it has put forward. The hon. Member for Southend West is absolutely right: if people listen and read its recommendations, they will realise that the APPG has a really firm and dedicated interest in this matter. I am most impressed by the APPG’s recommendations and report; I am sincerely impressed by the work carried out by it. In my research for my contribution to the debate, I learned a lot from its recommendations and from the work that it does. The contents of the report are informative in the extreme. It provides lots of detail and information, which I hope will help us to contribute to the debate in a positive fashion.

I sincerely hope, too, that there will be such an opportunity for the Minister, who is always responsive and helpful. We are pleased to have a Minister who clearly has an interest in the subject matter. When he speaks, we will understand just how important that is. However, we need to implement the recommendations for so many people throughout the UK. I am also pleased to see in her place the shadow Minister, the hon. Member for Washington and Sunderland West (Mrs Hodgson). I know that she will be equally positive.

The hon. Member for Southend West referred to George Best. He was the greatest footballer this world has ever known, according to Pelé, and what better person to say that than a man who many think was the best footballer in the world, even though whenever he has been asked he has said that it was George Best.

Unfortunately, George Best had problems; that was just the fact of it. With his talent and expertise came a problem, and the problem was alcohol. For a time, he and his wife lived in my constituency, just outside Portavogie, and he was very much someone who everyone wanted to associate with and spend time with. We well remember the day that he died and his funeral at Stormont. It was unusual for someone to be given the accolade of being buried from Stormont. I remember that it was a rainy day, but the crowds came from all over the Province just to be there and be part of what was a very poignant occasion as we laid to rest one of Northern Ireland’s greatest and, indeed, one of the world’s greatest when it came to playing football. I just wanted to say that, as the hon. Member for Southend West introduced it in his comments.

My parliamentary aide first went to Africa on a humanitarian aid project. She is a member of the Elim Church in my constituency. Elim Missions Ireland does some fantastic work out in Swaziland and Zimbabwe when it comes to helping with medical and education projects, as well as general all-round giving. It takes out a number of containers every year to help with that. When she told me about the list of vaccinations she had to get, one of which was for hepatitis A and another for hepatitis B, she said, “All I am really missing is hepatitis C.” Little did we understand in the office that the hepatitis C vaccine is greatly needed not simply on the plains of Africa, but in our own country. The hon. Gentleman referred to that.

The Northern Ireland Hepatitis B & C Managed Clinical Network is a website with great information that helps us to construct our speeches. Hepatitis C is an infection of the liver caused by the hepatitis C virus, which is carried in the blood stream to the liver. We know that it can cause inflammation and swelling. It can cause fibrosis and the scarring of the liver tissue, and sometimes liver damage. It may subsequently lead to cancer of the liver and possible death. Over the years as an elected representative, I have represented quite a few people who have died of liver cancer, although that is a separate debate. I remember only one person in that time who survived liver cancer to live for a longer period.

In Northern Ireland, there are more than 2,500 people known to be infected. A large proportion of people, however, remain unaware that they have the virus. That is one of the key issues on which we look to the Minister for a response. How do we raise that awareness to address those who do not know they have it, but need to know today? We all know that we need early diagnosis. If we find out early that something is wrong, we can do something about it, but if people are carrying the virus in their system and do not know, that is a real problem.

Like so many unseen diseases, the problem lies in the fact that many people do not realise they have been infected with the virus, because they have not had any symptoms or they may have flu-like symptoms that can easily be mistaken for another illness. I declare an interest as a type 2 diabetic, which is a chronic disease. Every year, I get that flu jab to try to stop flu and colds. By and large it works—it has for the last few years, anyway. People who get colds and flu regularly might wonder whether it is just a cold or flu, or something more. That is the question we are all asking.

With the pressure the NHS is under, as we all know, there are few of us who would not struggle through the winter with a perpetual cold or flu, thinking we were simply run down. Few people would bother their doctor with a cold, yet for some that prevents treatment from being started when it would be most effective.

This is Men’s Health Week. Those of us who fit into that category know that we need to look at our health more seriously. In Men’s Health Week, we need to say, “If you have a problem, go to your doctor.” People say that man flu is one of the worst things to have, but us men, unfortunately, do not respond to our health issues as strongly as we should. We should be going to our GP.

I have learned that there are six types of hepatitis C virus, which all have different genes, which are called genotypes and numbered 1 to 6. Almost all people in the UK who have hepatitis C have genotype 1, 2 or 3. It is important to know which type a patient has, as different types respond differently to treatment. It is possible to be infected with more than one type of hepatitis C at the same time. I remember an awareness event in the House of Commons not too long ago—it may have been last year—on hepatitis C. That day aimed to highlight the issue and make us more informed of the problems.

Hepatitis C is a blood-borne virus and there is some stigma attached, because it can be transmitted sexually or through sharing needles. That is certainly true, but it needs to be publicised that the virus can also be shared through an unsterilized needle in a tattoo parlour or something as innocuous as sharing a toothbrush, a razor or other personal items, because the blood can survive outside the body. An old toothbrush, therefore, can bring about a whole mess of issues. One person in four will clear the virus, but it is possible to catch it more than once.

The APPG’s positive recommendations on how hepatitis C could be eradicated should be central to our thoughts on where we go. All the issues I have mentioned are reasons we are not finding it easy to meet our own target of eradication by 2025 and the World Health Organisation target of world eradication by 2030. People may not be fully aware. Will the Minister confirm what has been done to meet those targets? Can the targets be met? What is new in the way that we address or respond to these things?

We need to ensure that those who present symptoms are tested and those with a history are re-tested. Someone who has had the virus before can have it again, and they might not know. With new drug combinations, it is anticipated that it will be possible to cure approximately 90% of persons with the HCV infection. Those new combinations are effective against the infection in patient groups that were previously described as difficult to treat. We need to focus on those difficult-to-treat areas.

I agree in totality with the recommendation of the APPG on liver health regarding the fact that NHS England has recently entered negotiations with industry to develop a new funding model for hepatitis C, which is expected to guarantee access to treatment without restriction. That is good news. I agree that the resulting deal should include effective mechanisms to ensure that funds are distributed equitably across different geographies and patient populations, so that no one is left behind. I will go further: Northern Ireland must be a key part of the distribution list, not simply the mainland of England, if we are to eradicate hepatitis C and address the issues, whatever they may be.

The hon. Member for Central Ayrshire, who is the Scottish National party spokesperson, will give us not only a Scotland perspective, but a United Kingdom of Great Britain and Northern Ireland perspective. We need to look at how we can do this with the Welsh Assembly, the Scottish Parliament and the Northern Ireland Assembly, despite the limbo land that it is in, through the permanent secretary. Any new funding must be accompanied by a comprehensive and strategic plan to ensure that it is implemented effectively.

To conclude, there is a way forward with hepatitis C. It is treatable. Let us put this in perspective: it can be done. All we need is the will and the strategy to make it happen. People need to be aware that they have hepatitis C in the first place, but other work needs to be done too.