Adult Autism Strategy

Jim Shannon Excerpts

Wednesday 5th March 2014 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I am pleased to make a contribution to the debate, and I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on bringing this matter to the House for consideration. Autism is an issue that I have helped constituents with on many occasions, as an elected representative. I am mostly aware of it, probably, in respect of how we can help those with autism through the benefits system. That is perhaps people’s first introduction to the issue. The right hon. Lady clearly laid out the issues pertinent to those with autism, and also mentioned the pressure that families are under. I want to dwell on that.

Diagnosis of autism has been increasing. I have been involved in the support of autism services for many years in Northern Ireland, through my constituency work and, formerly, in my role as a Member of the Northern Ireland Assembly and as a local councillor. I am sure that all hon. and right hon. Members in this Chamber can think of examples of when they have fought to have a child statemented, so that they could receive the help that they and their family needed for schooling, and so that support could be given to the family. Although this debate is about adult autism, autism affects people from the very beginning. I shall try to speak about that as well.

I recently spoke to a young mother of three who, with her husband, was beginning to attend parenting classes to help them better deal with their daughter. It was not that they were not willing to deal with her, but they needed help dealing with the behaviour issues of those with autism. We are talking about lovely children—and lovely adults—but they need help. The couple have two other lovely children, a great family support network and a close group of friends who help out, yet they recognised at an early stage that they needed more help and needed to be better equipped to deal with this. They said that they needed help understanding autism, so that they could understand and interact better with their child.

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

Does my hon. Friend agree that even in 2014, after a number of years in which awareness of autism has increased significantly—it has done so particularly in the past 15 or 20 years—there is still a need for many statutory agencies to act and react much more sympathetically and proactively, particularly in dealing with parents who have autism and have difficulties with parenting skills?

[Jim Shannon]

I thank my hon. Friend and colleague for clearly setting out the issue for the bodies responsible for helping parents. The parents I mentioned came to me about parenting skills, and they got the help, by the way, which was good. They told me what a blessing these classes were. That is why I am happy to stand with my colleagues today and highlight the needs of sufferers of autism and their families.

I am familiar with the care of one autistic young man. Many hon. and right hon. Members here have personal knowledge of such situations, and I hope that some of them will have a chance to contribute to this debate. That young man’s parents do everything for him: they dress him, cook for and feed him, clean, bathe and toilet him, amuse him, and hug, kiss and love him. He depends on his parents entirely for his every need. When he is at his day classes, they do the washing, ironing, cleaning, and shopping and try to find time to work to pay the bills at the same time.

The pressure on the parents and on the family unit is greater because of the problems and behavioural issues related to the autism of their child. They love their son—that is never in dispute—but love is not enough to get the family through the sheer exhaustion and the emotional and mental strain. Sometimes help is needed on matters outside of parental skills—through social services, for example, giving a bit of respite. Difficulties in the benefits system are practical issues for parents and those with adult autism; they relate to how parents can help their child through the school years and into the early years of adult life. It is up to the community and us as elected representatives to step up to the plate and help that boy and his parents. We can do that by supporting them and offering them the best that our society can do to ensure that they do not reach the point of no return.

We can all relate to the story of Susan Boyle, who has Asperger’s syndrome, which is also autism. She found out that she had it later in life. After she was diagnosed, she said that she almost felt relieved to know, after all those years, what was wrong and why she was different. That is a practical example of how someone the nation knows has been affected. She said what she said because she felt it was important that other people knew that autism cannot and will not hold people back, but they need help to get along. That is the thrust of this debate.

[Kate Green]

Does the hon. Gentleman agree that we need to raise awareness across society of the circumstances of adults with autism? For example, a young man in my constituency, looked after by his parents in the way that the hon. Gentleman describes, got severely into debt because he did not understand what financial services companies were saying when they were pushing credit cards and loans on him. Does he agree that educating the business community, neighbours and community groups, and everyone in society, about how adults with autism respond and cope would protect people and prevent those things from happening?

[Jim Shannon]

I thank the hon. Lady for her valuable contribution. Yes, I agree; I think all hon. and right hon. Members would. Churches have intervened to help in a number of complex cases in my constituency. What is not complex for us is complex for people with autism. There is a clear role to be played in that regard. Only 15% of adults with autism are in full-time employment; again, that results from some of the issues that they suffer from, including epilepsy, sleep disturbance and mental health problems. Many out there are trying to help and assist.

I ought to give a Northern Ireland perspective, because we have done good, helpful work there, health being a devolved matter. The Minister is aware of that good work because he has visited a number of times. Perhaps he might comment on that in his response.

The Northern Ireland Assembly put in place the Autism Act (Northern Ireland) 2011, which is the most comprehensive autism and single disability legislation in the whole of Europe. The need to do something was recognised at an early stage, as was the fact that the power was there to do it within the devolved Administration, and that was done. It is the first legislation in Northern Ireland requiring by law all Departments to plan and work together on the delivery of the strategy. The cross-governmental attitude that the right hon. Member for Chesham and Amersham requested is there. My hon. Friend the Member for East Londonderry (Mr Campbell) and the hon. Member for Stretford and Urmston (Kate Green), who both intervened on me, have confirmed that that should happen. Departments worked together on the delivery of a strategy. No cross-Department barriers are allowed at all. When we say “comprehensive”, we mean it. I am delighted that the debate is calling for such a strategy.

Autism Northern Ireland was at the centre of the campaign for the Autism Act (Northern Ireland) with its grass-roots campaign. There was no money or external lobby company—just hard work, and determination to make it happen and to gain support from all parties, which was forthcoming. It had autism ambassadors—health and education party spokespersons—to build up expertise on issues of concern. It also formed a partnership with Autism Cymru, which was already working with the Welsh Government on implementing a Wales autism strategy. That was the foundation of the Celtic Nations Autism Partnership—Celtic as in “keltic”, and certainly not “seltic”. No offence to any Celtic supporters who might be here, of course. That is a partnership with the autism societies of Scotland and the Republic of Ireland, which has led to initiatives in the USA. The CNAP and Members of the Legislative Assembly visited the US Congress and the European Parliament.

When we say that the approach is comprehensive, we are talking about looking across Europe and the world; examples were considered and discussions took place. That led to the Autism Act (Northern Ireland). A partnership was initiated with Autism-Europe and MEPs to develop a comprehensive and well-thought-out European autism strategy.

In 2012, I highlighted the difference between the Autism Act (Northern Ireland) and the English Autism Act 2009: the Northern Ireland Act is equality-driven and lifelong-focused. Perhaps the Minister will indicate whether the Government are trying to achieve in England the equality and lifelong focus that we have in Northern Ireland through the Autism Act (Northern Ireland) 2011. That Act amends our disability discrimination legislation, too, to include those with social communication disabilities such as autism. That supersedes the Great Britain Equality Acts, which only give recognition and guidance in primary legislation. That is significantly different from how we did it back home, where we have attempted to address adult autism.

I again thank the right hon. Member for Chesham and Amersham for securing the debate. She, like me and everyone else in the Chamber, sees the gaps in the strategy and the need to enhance provision by including an adult strategy. I have raised today the cases of a young girl and a young adult male. The strain on families grows greater with time as the child becomes an adult and more difficult to handle. The legislation should be amended to provide more state help.

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

I apologise for not being here earlier, but I was unable to get out of a meeting. One of my constituents contacted me to say that now that her daughter is 20, none of the professionals dealing with her daughter will speak to the mother. Does the hon. Gentleman think that we should make changes, so that with the young person’s permission, if they are over 18 and want their parents involved, all the different organisations work with the parents, who are there for their autistic children as they get older?

[Jim Shannon]

I agree entirely with that most helpful intervention. In my experience as an elected representative, that is exactly what people want. We should help whenever we can. The Minister for Health, Social Services and Public Safety in Northern Ireland has been anxious to collaborate with the Department of Health on what is working well in Northern Ireland. I have great respect for the Minister of State, Department of Health, but perhaps things could work better. There are examples of good work on the mainland. I looked through the background notes this morning before the debate, and one thing that caught my eye is that there is a specialist autism unit at South Devon college called the LODGE—Learning Opportunity for Development and Guided Education—which has been shortlisted at a national award ceremony in recognition of the education it provides to young adults with autism. There are many good examples of how Departments can do better for young adults with autism, and we should be trying to make that happen.

I am keen to assist and work with the right hon. Member for Chesham and Amersham to ensure that adequate legislation is introduced to make changes that will greatly affect the lives of those with autism and their carers. Never forget the carers, who also need support. They love their children, but they need help, because things are not simple. They want their child to have the best future possible, which does not include an institution. How will we deal with ageing parents? I know that I am not the only one who is aware of ageing parents. What will happen to these children and young adults when their parents pass away? They may no longer be able to look after their children and young adults alone. The answer is clear: they need support, and we must put it in place. Hopefully today is a first step towards providing that support to families across the United Kingdom of Great Britain and Northern Ireland. I support the right hon. Lady and her proposal.

Pancreatic Cancer

Jim Shannon Excerpts

Tuesday 4th March 2014 Commons Chamber

[Eric Ollerenshaw (Lancaster and Fleetwood) (Con)]

Thank you, Mr Deputy Speaker. As one Lancastrian to another, let me say that I am pleased to introduce this debate on access to new treatments for pancreatic cancer. It will become apparent why we are so pleased to get this debate at this time.

I want to start by reiterating some points I made about this dreadful disease in a debate in Westminster Hall last May that might help to set the context for this further debate today. Before I do, may I put on record my thanks to Pancreatic Cancer UK, Pancreatic Action, the all-party group on pancreatic cancer and others who have highlighted the impact of this disease? These include that great Lancastrian actress Julie Hesmondhalgh, who recently gave the disease some publicity in “Coronation Street”. More sadly there is the example of Kerry Harvey, who died at the age of 24 on 22 February and did so much in her last months to highlight the impact of this disease with the assistance of Pancreatic Action.

Pancreatic cancer is the fifth most common cause of cancer death in the UK. Approximately 8,500 people will be newly diagnosed with pancreatic cancer this year with around 7,900 people dying from the disease annually. Pancreatic cancer has the lowest survival rate of the 21 most common cancers. Five-year survival rates are less than 4%; a figure that has barely changed in nearly 40 years. Pancreatic cancer five-year survival rates lag behind many other EU countries and are almost half of what they are in the US, Canada and Australia. Only 1% of the National Cancer Research Institute Partners' total research spend is directed towards pancreatic cancer. By way of comparison, £3,613 per death per year is spent on breast cancer research compared to £553 per death per year on pancreatic cancer.

Some 50% of pancreatic cancer patients are diagnosed as a result of emergency admission—nearly twice that of all other cancers combined. Patients diagnosed as a result of emergency admission, compared to other routes to diagnosis such as routine GP referral, have significantly lower rates of survival. Pancreatic cancer patients have one of the least satisfactory NHS experiences of all cancer patients, evidenced by National Cancer Patient experience surveys.

If it is not too presumptuous, I would like to quote myself from the debate on 23 May 2012:

“Effective cures for pancreatic cancer remain stubbornly elusive, but we need to try to find ways to prolong patients' lives and to ease their pain and sufferings while always remembering that, with cancer, it is not only the patient who is affected but the people around them, including their family.”—[Official Report, 23 May 2012; Vol. 545, c. 93WH.]

The all-party group then found out that a new drug, Abraxane, in combination with standard chemotherapy was licensed for use in patients in the UK and Ireland with metastatic pancreatic cancer. Abraxane has been described as the biggest advance in pancreatic cancer treatment in almost two decades—for a disease, as I have already said, where survival rates have barely changed in 40 years.

As the drug has not yet been approved by the National Institute for Health and Clinical Excellence, it is not yet available on the NHS as a standard treatment. Pancreatic Cancer UK is very keen to ensure that patients are able to access Abraxane through the cancer drugs fund. The House will now see the importance of the debate tonight: the decision will be taken on Thursday 6 March—that is this week. Along with others in the Chamber, I would like to see the drug approved by the CDF this week and then eventually by NICE so that access to it is more readily available. We know that Abraxane is due to be reviewed by NICE very soon but this process takes a great deal of time, and it is time that pancreatic cancer patients do not always have.

One of my fears is based on my understanding of the way these new drugs are measured. This is based partly on what is called quality-adjusted life years which, so far as I understand it, is a measurement of the state of health and how long life is prolonged running from optimum health to death.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for giving way and for bringing this important matter to the House’s attention. It is surprising how many of us know people, both personally and from our constituencies, who have been affected by pancreatic cancer. I have some figures from Northern Ireland that might help his argument. Only 14.2% of males and 10.3% of females live longer than a year after diagnosis. When we get to five years, those figures drop to 2.8% and 2.9% respectively. Early diagnosis is key, along with new treatments. That would increase the survival rate by 30%. Does he agree that a strategy covering all the regions of the United Kingdom of Great Britain and Northern Ireland would be better for addressing the issue?

[Eric Ollerenshaw]

The hon. Gentleman hits the nail on the head. It is of course a UK issue, and one of the concerns is the regional variation in performance on early diagnosis and the impact that is having. We want to get rid of that.

I want to talk today about the new drug Abraxane. The vast majority of pancreatic cancer patients are diagnosed so late that the benefit of any new drug can be measured only in months, rather than years. Our worry is that, compared with other cancers, that benefit might be deemed insufficient simply because it is measured in months and might not register highly on the quality-adjusted life years measurement scale.

That is why Pancreatic Cancer UK launched its Two More Months campaign, which highlights what patients would have been able to do with two more months, which is the average additional survival time provided by Abraxane. I have a few quotes from relatives of those who have died from pancreatic cancer:

“Two more months would have been a significant amount of time for Nicola, only 25 years old herself, to spend with her four year old daughter”.

That was from Chris, Nicola’s brother.

“Two more months would have meant my daughter Gemma might have got to wear her wedding dress and walk down the aisle with Adam”.

That was from Debbie, Gemma’s mum.

“Two more months would have seen my wife Jill finish her Open University Modern Languages degree and attend an international social work conference in Buenos Aires, both of which she would have been very proud of”.

That was from Dave, Jill’s husband.

“Two more months would have seen Andy and I celebrate our second wedding anniversary, and given us more time to prepare for what was to come”.

That was from Lynne.

For me, two more months would have meant one last Christmas with my partner—

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

I congratulate my hon. Friend the Member for Lancaster and Fleetwood (Eric Ollerenshaw) on securing this debate and leading it in the knowledgeable and able way that he has led other debates on this important subject. I will do my best to respond to his specific points, but there may be some that I will need to respond to after the debate.

It goes without saying that cancer is a terrible disease, and my hon. Friend spoke movingly of his experience, but all hon. Members know ways in which it has touched them and their families and friends. I pay tribute to the work that he and colleagues in the all-party parliamentary group on pancreatic cancer have done to raise awareness of the disease. Its excellent report, “Time to Change the Story”, does much to counter common misconceptions about the disease.

My hon. Friend drew the House’s attention again to the particularly poor outcome for people who get the disease and the challenges in diagnosis. If we could match the best survival rates in Europe we could save an additional 75 lives a year. Clearly, if we exceeded those survival rates, more people would be saved.

Before I tackle my hon. Friend’s specific point about Abraxane, it is worth giving the context of other work that the Government are doing to support earlier diagnosis. We committed more than £450 million in funding over the four years to 2014-15. Sadly, there is currently no easy way of detecting pancreatic cancer and it can be particularly difficult for GPs to detect and diagnose it, especially in its early stages. However, to try to address the situation, the Department helped to fund a six-month pilot with Macmillan Cancer Support of a cancer decision support tool for GPs to help them to identify patients whom they might not otherwise refer urgently for this suspected cancer. Evaluation of the pilot is under way, and if it is found to be helpful, we will work with NHS England actively to promote its use. That tool was highlighted at a recent parliamentary event that some hon. Members might have attended.

We need to do more about earlier diagnosis and public awareness of the symptoms, which are often limited. As is often the way, I suspect that the recent “Coronation Street” story line has done more than many public health campaigns could have done to raise awareness. Yet again, well done to our broadcasters for covering some difficult issues and providing through Hayley’s sad story some important health education. It has reached many people, and we thank them for that.

On Abraxane, I am obviously aware of Pancreatic Cancer UK’s Two More Months campaign, and I congratulate my hon. Friend on this particularly well-timed debate. I am fully sympathetic to his points. As he says, two more months can mean so much to those who are affected by this cancer, and he gave some moving examples. We do not associate the disease with younger people. Sufferers are predominantly older but, as he illustrated, many people suffer at a younger age. I thank those who contributed to the report details of loved ones they have lost. My hon. Friend bears witness to his own loss, which we feel keenly with him.

I listened to my hon. Friend’s request that the recently licensed drug Abraxane should be made available from the cancer drugs fund. As he says, in the light of new evidence from the manufacturer, NHS England’s cancer drugs fund expert clinical panel is reviewing its earlier decision not to add it to its national list. One criterion in the scoring tool used by the panel is evidence of a drug’s impact on quality of life, which is what my hon. Friend spoke about. While I cannot in any way pre-empt the panel’s decision, I can fully understand how important this will be to people with pancreatic cancer. I will ensure that NHS England is made aware of tonight’s debate and the very good attendance. As the hon. Member for Scunthorpe (Nic Dakin) said, that reflects the impatience of parliamentarians, on behalf of their constituents, to see progress on this issue, which we seem to have been stuck on for so long. I undertake to do that immediately in the morning to ensure that the information is with the panel ahead of its deliberations.

My hon. Friend will be aware that Abraxane has not yet been assessed by the National Institute for Health and Clinical Excellence. Partly because of these situations, we established the cancer drugs fund to ensure that cancer patients in England have better access to life-extending or life-improving drugs that are not routinely funded by the NHS. He may also be aware that Novartis’s drug Afinitor is included on the national list for the cancer drugs fund, alongside two other treatments for treating pancreatic and neuro-endocrine carcinomas. More than 44,000 patients have benefited from the cancer drugs fund since October 2010, and we have recently announced an extension to funding for the scheme.

Looking further ahead, NICE is appraising Abraxane for untreated metastatic pancreatic cancer and expects to publish its guidance to the NHS in January 2015. That may seem a long way away, but, as been mentioned, this reflects the robust, evidence-based technology appraisal programme that NICE provides to ensure that clinical effectiveness and cost-effectiveness is taken into account when we look at drugs and treatments. The Government believe that clinically appropriate drugs should be routinely available to NHS patients, and we remain committed to the rapid uptake of NICE-recommended drugs in the NHS.

My hon. Friend referred to recent decisions on cancer drugs made by NICE. I am sure he appreciates that there will naturally be fluctuations in the proportions of drugs recommended by NICE each year, so a more accurate picture can be gained from looking at all NICE decisions on cancer drugs to date. That shows that almost two thirds of its decisions on cancer drugs have recommended their use for all or some of the eligible patient population. Far from making appraisals tougher, the most significant change to NICE technology appraisal methods in recent years has been to introduce greater flexibility in the appraisal of potentially life-extending treatments for patients at the end of their lives, and that has helped NICE to recommend a number of new cancer drugs for use on the NHS. That speaks directly to the extremely pertinent points that my hon. Friend made about how someone who has had such a diagnosis will see an extra two months in the context of the end of life, given that the progress of the disease can be very rapid from the point of certain diagnosis.

[Jim Shannon]

Will the Minister give way?

[Jane Ellison]

Yes, very briefly.

[Jim Shannon]

In an earlier intervention I asked about a UK-wide strategy. Has the Minister considered that for all the regions?

Patient Medical Records

Jim Shannon Excerpts

Tuesday 4th March 2014 Westminster Hall

[Mr Godsiff]

My hon. Friend makes a very good point. I hope that the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich (Dr Poulter) has taken note of what she said and that the Department will be forthcoming in identifying exactly how much confidential NHS data have been released to private profit-making companies. He might also point out how much income the Government have received from that.

There are a huge number of problems with the existing scheme. I could mention the information leaflets that look more like junk mail and have no opt-out return slip on them, or the fact that data extraction was planned to start before the code of practice on who will be allowed to access the data was completed, or the lack of a clear figure on cost. However, perhaps the most damaging flaw in the whole plan has been the refusal to listen to or to address those concerns when they were raised by doctors and patients. We simply cannot and should not bring in a scheme that lacks the consent and approval of the vast majority of people whose confidential health data will be used.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing the matter to the Chamber for consideration; it is the second time in three weeks that we have had the chance to debate the issue. Data collection is important, because of the benefits that could come from it, but confidentiality and people’s confidence in the system have been undermined. Does he agree that the fact that the NHS data collection is specific to England, and that the Northern Ireland Assembly Minister responsible has indicated that he would have some concerns over a similar proposal, indicates that there is not unanimous support for it across the whole United Kingdom of Great Britain and Northern Ireland?

[Mr Godsiff]

As usual, the hon. Gentleman makes an excellent point, which just goes to show that the Northern Ireland Assembly view the matter with more concern than the Department of Health seems to at the moment.

I say again that simply spending the next six months dropping more leaflets through letterboxes or building a website will not be anywhere near good enough. The Government must now come up with a coherent plan of how they will change care.data to address the many concerns that have been raised, and NHS England must work out how it will let people know about that.

Basically, the Government have two choices, but first they should stop fighting with GPs and patients who are unhappy with the scheme. I can assure the Minister that the GPs and patients who have contacted me have plenty of ideas about how the scheme could operate with proper safeguards built in. Will the Minister commit, during the six-month period, to engaging with GPs and patient groups about their concerns? As I have said, the Government have two options. They can either ensure that all the patient data extracted are only shared with non profit-making bodies working in the NHS or with recognised medical charities, or, and this is the second option, allow identifiable data to be extracted and used by companies for profit, but only, surely, when patients have specifically opted in to permit that.

The one thing any new scheme must have is clarity. Which datasets and variables will be released? Who decides what information or combination counts as identifiable information? Who will be held accountable if data are wrongly released and confidentiality breaches occur? What will happen if a patient withdraws their consent after data have been extracted, because they change their mind?

The Government must engage with GPs and patients. They could do far worse than look at the survey carried out by Pulse, which showed that three quarters of GPs believe that NHS England should abandon the opt-out system and ensure that data are extracted only after patients have given consent.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 25th February 2014 Commons Chamber

[Jane Ellison]

I am aware that there has been interest in this matter in my hon. Friend’s clinical commissioning group. The provision of alternative and complementary therapies is decided by CCGs, which have to take into account National Institute for Health and Clinical Excellence guidance and local health needs and priorities. The responsibility is with CCGs to achieve value for money and to make sure that they are delivering improvements in the quality of care and patient outcomes, and it is against those standards that we would expect them to measure those therapies.

[Jim Shannon (Strangford) (DUP)]

In the past 12 months there has been great advancement in new medications and alternative medicines, with new drugs for multiple sclerosis, for type 2 diabetes and for hepatitis C, and advancements in heart operations, rare diseases, and so on. Will the Minister indicate the time scale for the announcement of new medications and their availability on the NHS?

[Jane Ellison]

The hon. Gentleman, who follows these matters closely, is aware that medicines go through a process by which they are approved and recommended. Once they are in that position, it is, as I say, down to CCGs to make decisions about which treatments are appropriate for their patients and to measure them against the standards that I laid out.

Medical Records (Confidentiality)

Jim Shannon Excerpts

Tuesday 11th February 2014 Westminster Hall

[Mr Mudie]

I read with interest about the right hon. Gentleman’s unfortunate nose. He makes an important point.

My point is that there will eventually be a breach of security. It is inevitable, given the size of the database and the information stored in it. The human cost to the patient whose identity and medical history are made public is potentially disastrous. Careers could be ended, jobs lost, insurance refused and relationships destroyed if sensitive medical facts are made public or used by private firms, other people or, indeed, the media.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this matter to the House for consideration. He said rightly that there is a medical need to have some of the information, but many patients fear that their confidentiality could be taken over by money-making ventures from those involved in the process. Instead of an opt-out system, should there not be an opt-in system, whereby the GP and the patient get together and discuss confidentiality and an understanding of the system before anything happens?

[Mr Mudie]

The hon. Gentleman makes an important point, which I will cover when discussing the second issue that I identified. At the moment, I am dealing with security, but I will come on to the opt-out arrangements, which are far from satisfactory.

A further reason for concern is that the information will not be available for analysis and research in the national health service alone, but will be made available to non-NHS organisations. A Library note describes an interesting situation in which, without the consent of individuals, the information given can identify patients:

“In most cases, researchers can carry out their studies using information that does not identify you. Occasionally, however, medical researchers need to use information that does identify you. Only researchers who have obtained your permission or who have been granted special approval are allowed to access your identifiable data… The CAG approves requests where it is not possible to use information that does not identify you and it is not possible to ask you. There are a variety of reasons why it might not be possible to ask people; for example, where there are extremely large numbers of patients”—

so it is okay if researchers pinch a lot of patient information and identify the patients, but such patients would have no come-back, because that is reasonable in the eyes of the national health service.

Another interesting but concerning document includes a diagram helpfully provided by the Information Commissioner that describes three different levels of anonymity. First, in the public domain, there is no information—none. It is totally anonymous. Secondly, for approved organisations, whether NHS or outside organisations given permission, there is potentially identifiable data. Finally, organisations that have a legal basis, such as the police, have all the data—nothing is hidden. Interestingly enough, the police will not have to do what they have to do now, which is to get a court order to get the information; they will have an automatic right to it.

NHS England has explained that information given to private researchers will be anonymised before release, but that is undermined by its statement that the standard of anonymity it is using requires it to

“ensure that, as far as it is reasonably practicable to do so, information published does not identify individuals.”

That is hardly reassuring.

All those instances could be dismissed as speculation, but we should be aware that NHS England and the Government see the whole exercise as an opportunity for the UK to become a major player in medical research, with both the NHS and the private sector seeing strong economic growth and income from the use of the data. I forgot to mention that in the database will be included people’s national health service number, postcode, date of birth, gender and ethnicity. With all that information—particularly the postcode—it will be fairly easy to identify someone.

I turn now to the question of permission. This genuinely makes me very cross. The handover from GPs will take place in March—one month’s time—and after three months, depending on opt-out numbers, 100% of records will be on the national database. That should have happened already, but the Information Commissioner stopped the process late last year because the NHS had not consulted or, in the commissioner’s view, given enough information to the public. The commissioner ordered the NHS to postpone the process and take steps to give more information on both what was happening and the right to opt out. It has been given £2 million to do so, but it is far from clear that it is doing it willingly—it is doing it in bad grace.

I should mention the summary care record, another IT exercise that was carried out five or six years ago, more limited in its function but with the same organisational structure. A key element was that, unless a patient objected, their records would automatically go on the database. That tactic of forcing people to opt out rather than in was successful and with summary care records only 1% of patients in the pilot schemes opted out. There was a discussion about what system should be used for opting out for the new, greater system, a report was written, and surprise—officials chose the opt-out. With no real publicity, involvement or consultation, they have reckoned from the pilots that that might be the result nationwide. I thoroughly object to that.

NHS England published a leaflet, which might have come through Members’ doors, that supposedly meets the Information Commissioner’s request, but it is so bland, patronising and uninformative that it seems to have been written, miraculously, by a dead author—Enid Blyton. It is an insult to the general public. Opting out is not actually spelled out within the leaflet. NHS England is demanding that people go to their doctor’s surgery, discuss the matter with a doctor or practice manager and then give their decision on opting out. The House knows how busy doctors are and how busy their surgeries are. Is somebody going to take a day off work to go and see their doctor not because they are ill but because they want to discuss opting out? It is not sensible.

I suggest that NHS England is not serious about involving and empowering the general public. That is the second reason why real questions should be asked about this plan. The leaflet does not make the point that there are two opt-out options, one for giving the information out within the health service and one for giving it out outside the health service, or that people can obtain a form, fill that in and send it in to a practice.

I am taking up time and I know that a colleague wants to speak. I want the Minister to take his lead from the Information Commissioner and postpone the introduction of the scheme to allow further consultation and discussion about whether there should be an opt-in or an opt-out, about what information is being shared and about the security of that information. If the medical records of members of the public are going to be given out, they should have knowledge of that and should have had the opportunity to opt out.

NHS

Jim Shannon Excerpts

Wednesday 5th February 2014 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

Thank you for calling me, Madam Deputy Speaker. I will certainly leave sufficient time for the hon. Member for Walsall South (Valerie Vaz) to follow me.

It is a pleasure to speak in this debate. When it comes to the NHS, the nub of the matter is the same for both Government Members and Opposition Members. We have a real pride and interest in it, and we want it to do well. Over our years in this world, we and our families have all been recipients of its services, so it is very important.

The issue is a UK-wide one. Recently in Northern Ireland, some tough decisions have had to be made to close some A and E departments at particular times, and there have certainly been bumps in that process and better preparation might have prevented those problems. Such a decision was taken by the chief executive of the trust in my Down district council area. The hon. Member for South Down (Ms Ritchie) and I had an opportunity to meet the chief executive to discuss the issue and put forward our constituents’ viewpoint, but our opinion was not met favourably. The chief executive felt that there was no other option, and that other hospitals in the area could cope with the additional pressures. That decision has come under close scrutiny and review, and the savings or outcomes are not yet fully known, but the decision was taken and it stands.

The thrust of this debate is about improving patient care. The Government amendment to the Opposition motion mentions

“compassionate care, integration…and patient safety.”

We could combine the wording of both the motion and amendment and look for the same thing, and it is important to do so.

The NHS is one of the things that we can most be proud of in the UK—a system by which all people are entitled to a high level of care at no cost other than their tax and national insurance contributions. However, no matter how much money is spent in the Health Department, there is always a need for more. The portfolio of a Health Minister or Secretary of State is not one that I would take on for, as we used to say, all of the tea in china, and that is a lot of tea. I take my hat off to my colleague Edwin Poots at home, and all those who have to make tough decisions. I sometimes feel that I could not make such decisions, but I understand why they have to do so.

In preparation for this debate I considered the differences between how A and Es are run and the different quality of care in A and Es in different areas. In delving into the subject, I came across the last three words of the Opposition motion, which are “improving patient care”. I was shocked by a briefing I received from Macmillan Cancer Support, which was referred to by the hon. Member for Worsley and Eccles South (Barbara Keeley). Macmillan is very close to my heart, as I believe it is to many in the Chamber, because of the issues it deals with. I was left with no option but to use this opportunity to highlight the care of the cancer sufferers and survivors, whom we all know.

According to Macmillan Cancer Support, between 2015 and 2020 the number of people living with or beyond cancer in the UK will rise from 2.5 million to 3 million. By 2020, almost half the people living in the UK will be diagnosed with cancer during their lifetime. Just this week, I had an opportunity to go to the Backbench Business Committee—I was seeking a debate on another issue—and the hon. Member for Basildon and Billericay (Mr Baron) asked for a debate on cancer. The figures and headlines that we have seen this week indicate that cancer is a time bomb. It is frightening stuff. It used to be said that one in three people would be intimately affected by cancer, with a diagnosis for either themselves or an immediate family member; now that is changing to a cancer diagnosis for one in every two people.

In the run-up to that, we must certainly get our ducks in a line—if I may use such terminology—to ensure that we are ready, and that patient care will be of top quality, no matter what people’s postcode. The fact is that although our palliative care is second to none and there have been improvements in diagnosis rates, the UK is not to the fore in survival rates. Given that we face one in every two people having a cancer diagnosis in the very near future, that needs to change and to become a priority. If we can deal with a diagnosis early, we can improve survival rates. That is what we should all try to achieve.

Macmillan highlighted that a recent study on cancer survival rates in 29 countries in Europe—the Eurocare-5 research—has shown that the UK continues to lag behind other European countries. Macmillan is pleased to learn that the UK five-year survival rates for melanoma are 85% compared with the European average of 83%.

[Bob Stewart (Beckenham) (Con)]

Will the hon. Gentleman give way?

[Jim Shannon]

I am happy to give way, although I am mindful of the time.

[Bob Stewart]

I am a man. One of the problems with being a man is cowardice. The cancer survival rates would increase hugely if people like me would man up and get themselves checked out more often than they do. I am pointing the finger at myself.

[Jim Shannon]

The hon. Gentleman is correct in respect of prostate cancer. Medical organisations are also trying to highlight that problem.

Despite the improvement, I am concerned that the overall survival rates for nine out of 10 common cancers are lower than the European average. We have low survival rates for kidney, stomach, ovarian and colon cancers, and intermediate survival rates for rectum, breast and prostate cancers, cutaneous melanoma and non-Hodgkin’s lymphoma. Furthermore, the UK has one of the lowest survival rates in Europe for elderly patients. One reason for the rise in cancer rates is that people are living longer. Given that we have an ageing population, it is essential for the Government and the NHS to prioritise cancer care and early diagnosis.

Both the motion and the amendment refer to an integrated system. This week, we had the climax of the Committee stage of the Care Bill. The Minister who is responding to this debate said that he had visited Northern Ireland to see how our integrated care system works. The hon. Member for Leicester West (Liz Kendall), who was here earlier, expressed a wish to come to Northern Ireland to see how that system works. I hope to facilitate that for her so that the Opposition can understand the system that we have back home. We must have early diagnosis. That relies on patients informing their GPs of their symptoms, but also on the correct referrals being made and tests carried out when patients present at A and E departments. That should be considered when there is any shift around in care for those in A and E. If somebody is sent home with painkillers and told to make an appointment with their GP, how does that link up to the integrated system?

As I stated at the beginning of my comments, no matter how much money is allocated to the Department of Health, it will never be enough to meet the needs. For that reason, the Department is tasked with making savings. I understand that that is essential, but it is also important that the care that people receive through the NHS is second to none. There is a way of balancing those demands. Tough decisions need to be made and changes must be put in place, but the priorities must be clear. I ask for cancer care, including early diagnosis and support services, to be prioritised. I hope that everyone agrees that the most important words in the motion are “improving patient care”. On that, I think the House can unite.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 14th January 2014 Commons Chamber

[Jane Ellison]

The hon. Gentleman is right to say that it is a serious condition, which is why GPs need to take it extremely seriously and ensure that they look at the tests, and particularly at those who are susceptible to AF. We will get new NICE guidance in the summer on some aspects of self-monitoring, which will be an opportunity to remind all clinicians of their responsibilities.

[Jim Shannon (Strangford) (DUP)]

There is a community resuscitation strategy for the whole of Northern Ireland, and my constituents in Strangford, the Ards peninsula and Crossgar have examples of that. Will the Minister consider a community resuscitation strategy for England and Wales, similar to the one we have in Northern Ireland? It would help in this case.

[Jane Ellison]

I am happy to look at that. It is obviously an NHS England responsibility, but I will ensure that I draw its attention to the scheme that the hon. Gentleman mentions in Northern Ireland.

Joint Committee on Vaccination and Immunisation

Jim Shannon Excerpts

Wednesday 8th January 2014 Westminster Hall

[Mike Freer (Finchley and Golders Green) (Con)]

It is a pleasure to be here today under your chairmanship, Mr Gray. I am grateful to Mr Speaker for granting this debate on the work of the Joint Committee on Vaccination and Immunisation. I requested this debate following the JCVI’s decision on the 2 October 2013 to undertake further work on key issues surrounding the human papillomavirus, or HPV, vaccination programme. I understand that some colleagues may wish to comment on other aspects of the JCVI’s work. I want to focus particularly on the Committee’s decision to consider—I use its word—“urgently” vaccinating men who have sex with men, on attendance at sexual health services, and adolescent males. I intend to focus my remarks on that work now being undertaken with regard to the HPV vaccination programme, specifically in terms of exposure to HPV-related cancers, which are increasing in boys who have sex with females and the MSM community.

The decision of the JCVI to prioritise consideration of vaccinating MSM is noteworthy, not least because the minutes of its October meeting accept that a full economic model might not be necessary where sexual health clinicians can develop independent guidelines. Historically, the JCVI has often rejected vaccination of adolescent boys and MSM on economic grounds, so it is a major step forward for it to say that heath clinicians with expertise—particularly at sexual health clinics—can take such a decision on clinical grounds. That is welcome.

It is important—I have no doubt that my hon. Friend the Minister will need to ensure it—that any decision on extending vaccinations is clinically and financially sound. I do not seek to undermine that decision. I wish to stress the economic benefits of extending the vaccination swiftly, rather than stress other issues of equality, which I raised in an Adjournment debate last year.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this important health matter to Westminster Hall for consideration. There have been significant positive results from vaccinating women and girls for HPV, so clearly there is an advantage shown in doing that. That consolidates the hon. Gentleman’s request for the same vaccination to take place in men and boys as well. Does he agree that the same should happen with regard to men as has happened for women and girls?

[Mike Freer]

The hon. Gentleman makes a good point that repeats some of the discussion we had in last year’s Adjournment debate. The success of the vaccination programme among girls has had a dramatic impact on HPV-related cancers among women. However, the flaw was that it assumed herd immunity for boys who were having sex either with girls or within the herd. But of course, not all boys have sex with girls: some—shock, horror!—have sex with other boys, and not all boys have sex within the herd. Increasingly, in a global economy, and particularly in Europe where the vaccination programme is not the same, adolescent boys in this country are exposed to women who have not been vaccinated. It is important to close the loophole for adolescent boys having sex with unvaccinated girls and those having sex with unvaccinated boys, who, obviously, grow to be unvaccinated men.

If the JCVI has agreed to urgently review the economic case for extending the vaccination programme, why is this debate needed? Before I discuss that, it is worth reminding ourselves what health problems we are trying to prevent. I recall, during the Adjournment debate, seeing the duty Whip sink ever further on the Bench as we discussed certain topics and cancers. This is not a pleasant subject, but I would rather discuss an unpleasant subject than have to deal with it in our hospitals.

Nine out of 10 cases of genital warts are HPV-related; oral-related HPV infections—men are six times more likely than women to have oral infections—increase the risk of cancers of the mouth, throat, neck and head cancers; and there are HPV-related penile and anal cancers: HPV is associated with 80% to 85% of anal cancer in men. In 2009, just after the HPV vaccination programme started, there were more than 6,500 cases of these cancers, with 47% of penile cancer and 16% of head and neck cancers thought to be HPV-related. The latest incidence data show that in 2010 there were 437 incidences of anal cancer and 5,637 of oropharyngeal cancer, 515 instances of penile cancer and 180,000 instances of genital warts. Rates of HPV-related cancers are on the rise in the UK. Throat cancer has overtaken cervical cancer as the leading HPV-related cancer. I am pleased that the JCVI has accepted that there is an urgent need to review the clinical and economic case for extending the programme to adolescent boys and MSM.

I should like to put on record my thanks to the Minister’s predecessor, my hon. Friend the Member for Broxtowe (Anna Soubry),for her support in this matter and for facilitating a teleconference, which she and I and representatives of the Terrence Higgins Trust had with the Chairman of the JCVI, which I believe gave some impetus to this change of heart and the speeding up of the work by the JCVI. That was a significant breakthrough.

The key point in this debate is that although the JCVI’s urgent report is due at some unspecified point later this year, the procurement of the next round of HPV vaccinations will commence in October or November this year. I am concerned that if the JCVI does not report in time and this procurement round is missed, we may have to wait four more years—I believe it is a four-year procurement round—before the HPV vaccination programme is extended to adolescent boys and MSM, if that is the recommendation.

Dementia Care and Services

Jim Shannon Excerpts

Tuesday 7th January 2014 Commons Chamber

[Alec Shelbrooke]

I am most grateful to my hon. Friend for those comments. I am sure that everybody has experiences of their own, but perhaps it will help the House if I speak about my grandmother, as I did earlier. I was aged about 12 or 13 at the time of her diagnosis, and my sister was two years younger. My dad was working as a teacher and supporting me, my mum and our family, but he was also dealing with his own mother. I remember the toll that that took on him. He had to work out what was the best thing to do for his mother. He toiled over the decisions that he had to make for a long time, such as selling the family home in which he had been born and brought up in order to raise money for the care home. My hon. Friend is right that there is a massive toll on the families involved, as well as on the people who have this terrible disease.

Despite the focus on dementia, there is a danger that the momentum that has been created by the Prime Minister’s challenge on dementia, the G8 summit and the work of the Science and Technology Committee and the all-party parliamentary group on dementia will be lost if the Government do not act in a number of areas.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this matter to the House for consideration. Every one of us will have knowledge of this matter personally and from our position as elected representatives. One of the homes in my area has 23 residents and 20 of them have dementia. The magnitude of the problem is tremendous. Does he agree that an exchange of medical information would be helpful? Northern Ireland has the highest diagnosis level in the United Kingdom. Perhaps it is time to exchange the knowledge in Northern Ireland, Scotland, Wales and England to come up with a strategy for the whole of the United Kingdom of Great Britain and Northern Ireland.

[Alec Shelbrooke]

I am most grateful to the hon. Gentleman. I am sure the Minister heard his comments and will perhaps reflect on them when he sums up the debate.

I was talking about a number of areas. First, to continue making improvements along the current trajectory, it is crucial that the national dementia strategy for England is updated from the 2009 version. That strategy identified 17 key objectives for the NHS and social services aimed at improving the commissioning of dementia services, the quality of care delivered in hospitals and care homes, developing a clear picture of research and evidence needs, and providing support for carers. Will the Minister please outline what meetings have taken place about the effectiveness of the NDSE, and say what plans he has for a formal evaluation of it?

Secondly, in spite of the obvious benefits of the national strategy, so far the Government have made no plans to renew it. I welcome the Prime Minister’s challenge on dementia, which is ambitious in its plans and places a welcome political spotlight on the issue. However, that challenge alone does not provide the breadth of detail needed to guide health and social care services to make improvements, and neither does it carry enough accountability measures, which a national strategy would do.

A new national dementia strategy, with guidance for commissioners of health and social care, GPs, hospital trusts, care homes, and others, must be published before the current strategy expires in April this year. It does not seem to be a new trend of coalition Government not to renew national strategies, because in 2011, new national strategies for cancer and chronic obstructive pulmonary disease were published, and one for hearing loss is due.

--- Later in debate ---

[Alec Shelbrooke]

I seem to be one page behind the House in my speech this evening, because interventions keep pre-empting the next part of my speech. My hon. Friend is correct that we need wider support. I have become a dementia friend, as I know many other hon. Members have.

The aforementioned points all combine in reality to have an impact on post-diagnostic support, as well as the support for those who have not been diagnosed but need care. In my constituency, some inspiring examples make me feel optimistic that dementia can be dealt with effectively and compassionately. I have seen at first hand that such support, delivered well and early in a person’s dementia journey can lead to better outcomes.

[Jim Shannon]

There have been great advances in medication. If people get an early diagnosis, medication can give them an extra five to six years of quality life. Does the hon. Gentleman agree that it is important that medication is available across the whole United Kingdom to give people with dementia or Alzheimer’s a better quality of life?

[Alec Shelbrooke]

I thank the hon. Gentleman for that intervention. He makes important points that reflect what the hon. Member for Liverpool, Walton (Steve Rotheram) said earlier: it is not just about treating the disease when it is there, but about how much preventive work can be done in the first place.

As I said at the start of my speech, I wish only that some of the strategies, diagnoses and drugs that are now available were there for my grandmother 25 years ago. I was only about 11 to 13 years old in the two years before she finally went into a home, but I realise in hindsight how her quality of life was slipping away. I talked about the toll that that took on my father when he was trying to do what was best for his mother. He would be at work all day. His mother lived in south-east London while we lived 20 miles away in Kent and he would get a phone call at 3 am from her next-door neighbour saying, “Your mother”—she was in her late 70s—“is out walking the street in her nightgown.” Those are the pressures and there was nothing in place at that time. She was still living on her own and, as her grandchildren, we would still visit her. Today, I believe that she would have had a better quality of life.

I am encouraged by some of the things that are going on. I want to draw attention to a chap called Paul Mancey and his team at Orchard Care Homes. They are located in my constituency and are developing care partnerships between charities and care providers, which is very much what my hon. Friend the Member for Bradford East (Mr Ward) was talking about. This new approach means that residents are tested for hearing loss, diabetes and dementia symptoms on entry to the care home, ensuring that appropriate care packages are put in place.

Many other care homes are developing innovative ideas, too. I am pleased to say that care homes have developed immensely since we moved my grandmother into one in the early 1990s, and even more delighted that the leading company on the development of care villages is located in my constituency. Graeme Lee and his team at Springfield Healthcare have set the bar on building a quality and comfortable dementia-friendly care village at Seacroft Grange, which is located in the constituency of the hon. Member for Leeds East (Mr Mudie).

As is often the case, however, the truly inspirational support networks are not those provided by the professionals. My hon. Friend the Member for Beckenham (Bob Stewart) talked about early diagnosis, and there are community champions. One community champion in my constituency is Peter Smith, who established the Tea Cosy Memory Café in Rothwell, which provides a welcoming place for those with dementia and their carers, as well as making Rothwell the first dementia-friendly community in Leeds.

The Alzheimer’s Society has done great work to promote awareness of dementia. Hon. Members can play a greater role, too, in raising awareness. I alluded to the fact that, like many Members, I am proud to be a dementia friend and to support the work of the Alzheimer’s Society. I urge as many Members as possible to become a dementia friend and to help the Alzheimer’s Society.

--- Later in debate ---

[Norman Lamb]

I very much agree with the right hon. Lady on that. I think that what she argues for is developing. We are not there yet, but it is important that we have developed this ambition to achieve a diagnosis rate of two thirds, which encourages every part of the system to focus on what it needs to do. It is not a nationally imposed arbitrary target; it was based on getting every part of the system to think about what it can achieve by setting ambitious objectives. Collectively, that amounts to an ambition to achieve a two-thirds diagnosis rate, but in itself, of course, a two-thirds diagnosis rate is not good enough. We should not be satisfied when we achieve that; we have to press on. We know that the community in Gnosall has a diagnosis rate of close to 100%, so we should not be satisfied until everyone is getting properly diagnosed on a timely basis. I agree with the right hon. Lady’s point. Under the new system, with the health reforms making clinicians much more involved in the commissioning of care locally, there is a greater chance of getting the engagement of general practice across the country than we perhaps had in the past through the primary care trust route.

[Jim Shannon]

Has the Minister had an opportunity to consider the point I made in my intervention on the hon. Member for Elmet and Rothwell (Alec Shelbrooke), which was about the exchange of good practice and information between the four regions of Scotland, Northern Ireland, Wales and England? Ever mindful that the highest levels of diagnosis for the whole of the United Kingdom are found in Northern Ireland, has the Minister had a chance to discuss these matters with the Health Minister, Edwin Poots from the Northern Ireland Assembly, for instance, to take the issue forward? We all gain from good practice across the whole of the United Kingdom of Great Britain and Northern Ireland, and we all gain from the exchange of good ideas.

Hospices (Children and Young People)

Jim Shannon Excerpts

Wednesday 18th December 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to say a few words in relation to this topic. I thank the hon. Member for Pudsey (Stuart Andrew)—his constituency is wonderfully named—for his contribution. It summed up and set the scene for how we all feel about the matter. We thank him for his compassion and knowledge on the issue; it was a real pleasure.

Whenever I think of this issue, I think of Northern Ireland Hospice and its good work, and of all the other hospices throughout the United Kingdom, which other Members have spoken about, and of the scourge of cancer and specifically how it affects young people. Yesterday we had a debate on rare diseases. Perhaps the two debates could have been merged together—one on rare diseases and palliative care—because they very much go hand in hand.

As well as praising the hospices, I would also like to mention the Macmillan nurses, who, in many cases, make life just that wee bit easier for the families and those concerned. I pay special credit and thanks to those caring men and women who manage to make life that little bit less stressful for those suffering from cancer and for their families.

[Robert Flello (Stoke-on-Trent South) (Lab)]

I, too, thank the hon. Member for Pudsey (Stuart Andrew) for securing the debate, and there is also a hospice—the Donna Louise children’s hospice—in my constituency, which does marvellous work. Will the hon. Gentleman join me in commending the caring professionals, whether volunteers or paid staff, who will be working in hospices over Christmas and new year, caring for people in often difficult, if not tragic, circumstances?

[Jim Shannon]

I thank the hon. Gentleman for his intervention. I do join him in commending them, as does everyone inside and outside the House. We recognise the tremendous work they do—they are on call at all times. I sometimes wonder how they handle the sadness and emotion they have to confront each and every day as part of their vocation.

Northern Ireland Hospice is committed to fostering, encouraging and supporting a quality research culture internally, regionally, nationally and internationally, and it is known for the high level and quality of care it gives. My right hon. Friend the Member for Belfast North (Mr Dodds), who has just left, referred to the Northern Ireland Assembly Health Minister’s commitment to contribute £2.3 million to hospices, and that commitment by elected representatives shows the appreciation of what hospices do.

It is essential that those receiving end-of-life care have the best care available and are made as comfortable as they can be in their last days. It is also essential, as the hon. Member for Pudsey said, that the family have all the information they need, whether that is in a hospice setting, the patient’s home or through a palliative care package—those are the three areas that have to be looked at.

Some 49,000 young children in the United Kingdom of Great Britain and Northern Ireland live with a life-limiting or life-threatening condition and need palliative care. There are inspirational professionals working alongside them in their family homes, hospitals, community settings and hospices across the United Kingdom.

It is horrifying to think that if we had more children’s hospices, they would be filled, because the need continues to grow. Every time we find a drug that works against a strain of cancer, for example, a resistant strain appears. For that reason, it is essential we put money into not simply hospices and nurses, but research, and I am convinced the Minister will take the issue of research on board in her response.

I recently read a report stating there is a real danger that palliative care and palliative medicine will be the least evidence-based subjects in medicine in a few years’ time unless vastly more research is done. While palliative care is vital, research is equally important, so perhaps the Minister can give us some thoughts on that.

I hope we are all blessed with young children and grandchildren who are bubbly and full of life, but some families are not. Those families have to live with a child who is ill, and it is tremendously heartbreaking to acknowledge that. Before yesterday’s debate on rare diseases, the Teenage Cancer Trust sent us some information saying that 30% of children with life-threatening diseases will die before they reach the age of five. Again, that puts things in perspective.

Macmillan nurses told me that the sufferer’s mood is affected by their family. If the parents are content and relaxed, the child is likely to reflect that. This is about the family and everyone involved. It is also about the day trips and the residentials, which the hon. Member for Pudsey referred to.

We have fantastic charities, such as the Make-A-Wish Foundation, that help children with terminal illnesses live a dream. However, that in no way absolves us, as MPs, from our responsibilities to the families, and nor does it absolve the Government or the regional Assemblies from theirs.

Together for Short Lives has also highlighted an issue to me. Will short breaks for children who need palliative care be fairly and sustainably funded from ring-fenced funding allocated to local authorities for short breaks? We look forward to the Minister’s answer, and I trust it will be yes.

Another issue highlighted to me was benefits for families. As soon as the child is taken to the next scene of life—as soon as they leave this life—the parents are left to deal with their grief and their debt. Sometimes, handling the first overrides handling the second. There must be some leeway over cutting off benefits, so that the family has time to realise their financial situation and handle it accordingly. The Minister does not have direct responsibility for the benefits system, but will she say how we can help families get through the switchover at a time when grief is the ultimate driver of where they are? What can we do to ensure that they are entitled to time off and that their benefits are reduced gradually?

[Sarah Champion (Rotherham) (Lab)]

On the point about families, no parents separated as a result of the death of their child in the four years I was at Bluebell Wood, whereas the average in the country is 50%. Hospices are also very good at helping families to secure benefits and housing and to deal with their grief. The hospices therefore give holistic care.

[Jim Shannon]

I thank the hon. Lady for contributing her personal knowledge on that matter. I ask the Minister to tell us how the Government will improve support for the families of children with life-threatening or life-limiting diseases who die, to ensure that family members are entitled to time off and to have their benefits reduced gradually.

To conclude, a child’s illness is the most stressful thing a parent can face. We are failing the family and, by extension, the child if there is a lack of support. That can and, indeed, must change. I ask the Minister to outline what will be done to bring about the changes the hon. Member for Pudsey and others have outlined. We cannot heal these children—I wish we had that talent, but we do not, as much as we might want it—but we can make the journey easier. When will we start to deliver the extra, full care that is so needed?