(10 years, 1 month ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
Mrs Osborne, it is a pleasure to see you in the Chair, as always.
I thank the hon. Member for Strangford (Jim Shannon) for securing this debate and for raising awareness in the House of the desperate need to increase organ donation. I will focus on cystic fibrosis. As the Minister will know from an Adjournment debate I secured a few months ago, I have a nine-year-old niece who has CF. Thankfully, she is in pretty good health at the moment, but as a family we obviously live with the knowledge that her condition is likely to deteriorate, particularly as she gets into her 20s.
In that Adjournment debate, I spoke about the excellent CF centres that we have in Bristol for children and adults with the condition, and one of the key things that I discussed with people when I visited Bristol’s adult CF centre was the desperate need for lung transplants. Thankfully, life expectancy for people with CF is increasing; it used to be very much a childhood disease, as people with CF did not survive into adulthood. However, it is still a life-limiting illness and most of the 10,000 people with CF in the UK will need a lung transplant to extend their lives.
CF is the third most common reason for lung transplantation and CF patients have the best survival rate among those who receive lung transplants, with 60% of them living for at least another five years and some for much longer. Obviously, given medical improvements, the situation is getting better all the time. The Cystic Fibrosis Trust gives the example of 43-year-old Vicky Petterson, who was successfully given a transplant when she was 28, enabling her to watch her son grow up and to celebrate two decades of marriage. A lung transplant is not a cure for CF, but it can give the recipient and their family the priceless gift of more years of life.
Generally, there are about 60 people with CF on the transplant waiting list at any given time. On average, they will be on the list for 412 days, and it is quite shocking to compare the UK’s statistics in this area with those of some other countries. In Austria, the average wait is 107 days; in France, 110 days; in Spain, 180 days; in Belgium, 194 days; and in Germany, 244 days. The Netherlands is much worse than those countries, with an average wait of 594 days, but the UK figure is one of the worst in Europe, with an average wait, as I said, of 412 days, which obviously puts a huge strain on patients waiting for transplants. While they wait, their condition will deteriorate quite significantly; many of them will become dependent on oxygen and will have to spend most of the time they wait in hospital, as they require intensive treatment. Usually, they would not be expected to live for more than two years without a transplant, so a clock is ticking as they wait for the call about a transplant coming through.
A few months ago, the case of Matt Lodge was reported in The Bristol Post. Matt was 23 and had done pretty well throughout his time at university, but then his condition had suddenly deteriorated. While he was waiting for a transplant, he always had to stay within four hours of Birmingham, so that he could be ready to drop everything and go there for a transplant. One night, he received a phone call at 1.30 am to tell him to go to Birmingham. He obviously headed up there, only to be told that there had been a mistake and his blood type was not compatible with the donor organ, so the operation could not go ahead. Several months later, he is still on the transplant waiting list; we can only imagine how traumatic that must be for him. It was very brave of him to have gone public with his experience and to use it to support the opt-out campaign and to try to encourage more people to come forward as donors.
As the hon. Member for Strangford said, the Cystic Fibrosis Trust is campaigning to maximise the use of organs. The trust’s “Hope for More” campaign has already been mentioned, as has the national transplant week’s “Spell it Out” campaign.
Some 32% of the UK population—just over 20 million people—are registered at the moment, but it is important to note that lack of registration is not necessarily a problem, because fewer than a third of donors would have been registered in the first place. The biggest issue is consent. The CF Trust reports that the UK has one of the highest rates of family refusal in the western world. Obviously, it is difficult for families to face such a big decision when they have just lost someone: they might feel that it is a violation of their loved one’s body or they might just not be ready to talk to doctors about such issues, particularly if the death has been sudden. That is why it is so important for people to discuss the issue with their families. It is one thing carrying an organ donor card or being registered online, but the best thing people can do is tell their family in advance that they would want that done, because then the decision is much more straightforward.
The hon. Member for Strangford talked about resizing—downsizing—lungs. The “Hope for More” report details ways, including resizing lungs, to reduce the time that people spend on the waiting list, other than just increasing people’s willingness to be donors.
Just 23% of donated lungs were successfully transplanted last year. Some of those not used may have been clinically viable, if only certain procedures could have been followed. As the hon. Gentleman said, the CF Trust is concerned that the criteria used to assess whether a lung is safe and to designate “extended criteria lungs” may not reflect current scientific knowledge because those criteria were mainly developed 30 years ago and need bringing up to date. The trust’s report accordingly calls for a
“renewed focus on understanding what lungs are suitable for transplant”
and for more transplant surgeons to be trained in downsizing donor lungs. As the hon. Gentleman said, only three people are trained to do that. Downsizing is particularly important for CF patients, as the hon. Gentleman also said, because they tend to be smaller than usual and cannot necessarily cope with average-sized lungs.
Techniques such as ex-vivo lung perfusion could be used to assess and potentially repair sub-optimal lungs. I understand it is still experimental at this stage, but the CF Trust reports that researchers suggest it could improve transplant rates by up to 30%.
The hon. Gentleman has obviously been well briefed by the CF Trust—I was listening to him, thinking, “Okay, cross those bits out”—so I will not go into too much detail about the national lung allocation system. However, as he said, lungs are allocated to the nearest transplant centre, which will assess the patients on its own list for the most suitable match. That would apply even if there were a patient in more urgent need on another transplant centre’s waiting list.
This year, NHS Blood and Transplant has developed a super-urgent group—some people will be considered a national priority and will be able to receive compatible lungs from anywhere in the UK. However, the CF Trust is keen for the measure to be rolled out and used anywhere. Of course, it is quite difficult to assess who is the most urgent case, but the issue needs to be looked at. As the hon. Gentleman said, there is already a similar system for heart transplants.
I, too, work closely with the Cystic Fibrosis Trust here in Parliament. I have hosted a number of events and have met people who have had lung transplants. The hon. Lady is right to highlight the UK’s average waiting time of 412 days, one of the highest in Europe. I lend my support to the CF Trust’s idea of a national lung allocation system, which could be a big step forward in reducing that waiting time and could make the use of those organs a lot more effective.
I understand that the hon. Gentleman chairs the all-party group on cystic fibrosis. I am grateful for his support.
My final point is about the importance of psychosocial support for patients preparing for and recovering from a lung transplant. It can be a stressful process, yet support is not commissioned as a demand-led service. The fact that lung transplants have been cancelled because patients did not feel psychologically prepared or able to go through with them, despite all the desperate waiting, indicates that more consideration needs to be given to psychological support and a more holistic approach to the whole process.
I hope today’s debate has underlined the need for a more joined-up approach across the board to improve organ donation. The issue is not just about registration and donation rates; it is also about innovation, to improve the availability and allocation of donor lungs. I look forward to the Minister’s response.
The hon. Lady has just raised the campaign by the Anthony Nolan bone marrow trust—it is called Register and Be a Lifesaver. As the hon. Member for Stretford and Urmston (Kate Green) pointed out, there is still an issue when it comes to different ethnic backgrounds. As the bone marrow register has been mentioned, I want to point out that northern Europeans have a 90% chance of finding a bone marrow donor, but that figure falls to just 40% for people from black, Asian and minority ethnic backgrounds.
I was just about to come to the specific challenges of regional differences and of people from different communities having access to organs. To finish my point about the important campaign by the Anthony Nolan trust, as part of that campaign the organisation wrote to all MPs to encourage us to write to schools in our constituencies to inform them about the opportunity to have the Anthony Nolan trust come in and inform 16 to 18-year-olds about the chance to be a life saver. I want to put on the record that I strongly encourage other Members to write that letter if they have not already done so—I sent mine off only last week—because it is something that we can do as MPs to encourage people locally to get involved.
In response to the hon. Gentleman’s point about specific communities, the challenge, as we have heard from a number of Members, is not simply getting more sign-ups to the register but targeting specific communities and areas that we know are losing out from the stark inequalities in our system. In the north-west, for example, where my constituency is situated, patients are waiting longest for a transplant and we have the highest death rate among those who are waiting: 62.2% of patients in the north-west wait more than six months for a transplant, compared with an average for England of 47.3%. Some 23.2% of patients in the north-west have waited more than 18 months for a lung transplant, compared with an average for England of 15.8%. We need to take regional differences into account.
Many Members have referred to lung donation. My hon. Friend the Member for Bristol East (Kerry McCarthy) referred to the zonal lung allocation system, an important issue that I will focus on in more detail. The Cystic Fibrosis Trust has raised legitimate concerns about that system and is concerned about equity in lung allocation.
Currently the allocation of lungs to transplant centres operates on a rota system. When a donor becomes available, the organs are offered to the closest transplant centre if a matching recipient has been identified. If no suitable candidate is found, the organs are then offered to the next centre, as per the pre-agreed rota. The likelihood of getting a lung transplant and the time frame for the procedure will therefore vary according to where an individual is listed. A donated organ will not currently always reach the candidate most in need anywhere in the country. Will the Minister give her view on the zonal lung allocation system? Does she have any plans to develop a more needs-based system?
It is not just where someone lives that can affect their chance of having a transplant operation if they need one. People from BAME communities are up to three times more likely to need a transplant than others, yet, because organ matching is likely to be closer when the ethnicity of the donor and the recipient are the same, they have to wait much longer. For example, on average a person from a BAME community will wait a whole year longer for a kidney transplant than other patients.
The #Spit4Mum campaign to find suitable stem cell donors for a woman called Sharon Berger—I am not related to her—highlighted the specific challenge of finding suitable donors for members of the Ashkenazi Jewish community. I am a member of that community and I have done my bit to contribute to that specific campaign. But we know that there are many different ethnic minority communities that struggle to find donors of organs and stem cells.
Such inequalities are not acceptable. We cannot accept that some of our citizens will be far more likely to die than others because of where they live or their ethnic background. Will the Minister address that point specifically and outline what concerted action the Government will be taking to tackle it?
Many Members on both sides have raised their concerns about what more we can do to support families in honouring the wishes of their loved ones. It is very difficult when someone passes away, but we know that in 2011-12, 125 families overruled an individual’s intention as recorded on the NHS organ donor register to become an organ donor. Many people do not realise that if they have not made their donation decision clear, their family could be asked to agree to a donation taking place. Nobody wants to leave their family with such a burden, so it is vital that we encourage and support families in having those conversations earlier. The theme of the current national transplant week is “Spell it out”. Will the Minister outline what she is doing to promote that message further? There is a great disparity between those people who sign up and share their intentions with their families and those who do not, and there can then be issues with vetoing.
I will touch briefly on the issue of the opt-out or presumed consent system, which was raised both by my hon. Friend the Member for Bridgend (Mrs Moon) and by the hon. Member for Montgomeryshire (Glyn Davies). There are many obvious advantages to the system. I return to the point I made earlier: there is a gap between the 51% of the population who definitely want to donate their organs, the 31% who would encourage it and the 31% who have actually signed the register. The system will be introduced in Wales in 2015. Any change in legislation will need to take into account the impact of the system in Wales and must have the backing of the public. What consideration is the Minister giving to learning from the introduction of the system in Wales and to introducing a similar system in England?
(10 years, 2 months ago)
Commons ChamberFirst, if only it was underspent. More than 50,000 patients have now benefited from the fund, which is fully spent. More than £1 billion will have been committed in the full period of the fund. I have confirmation from the Secretary of State that he has already met Lawrence Dallaglio. I hope that will reassure the hon. Gentleman.
8. What steps his Department is taking to improve access to and standards of dental care.
Between May 2010 and December 2013, 1.5 million more patients were able to see an NHS dentist. We are committed to reforming the current contractual arrangements to promote improvement in oral health and to increase access to dentistry services.
What specific advice would the Minister give to my constituents who are trying really hard to access good quality, local dental care on the NHS?
A recent HealthWatch report highlighted this issue in west Yorkshire, where access to dental services has been a long-standing challenge. NHS England is looking at the financial arrangements in west Yorkshire and will report back soon. I am happy to meet my hon. Friend and representatives from the local NHS to take this issue further forward and ensure that local patients get the service they deserve.
(10 years, 6 months ago)
Commons ChamberWe absolutely want to make primary care more accessible and that is why we are introducing named GPs for everyone aged 75 or more from April. This is a significant and important reversal of, I think, a mistake that everyone now agrees was made in 2004 when named GPs were abolished. Its purpose is to make GPs more accessible to the people who need them the most.
T9. The father of one of my constituents passed away at the weekend, one of 8,700 people who are diagnosed with pancreatic cancer each year in the UK, of whom only 3% will survive beyond five years. That survival rate has not changed in over 40 years. Will my right hon. Friend update the House as to what the Government are doing to improve patient outcomes for those with pancreatic cancer?
(10 years, 8 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is a pleasure to serve under your chairmanship, Mrs Osborne. I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on securing the debate. I certainly like the description of him as the smiling MP. He has much experience to bring to this whole debate.
I should declare that I am a long-standing supporter and patron of Julia’s House, a children’s hospice in my constituency. I am pleased we have this opportunity to recognise the plight of families with a seriously ill child, as well as the role of children’s hospices and other palliative care providers in supporting them. I endorse many of the comments that have been made.
I would like to use this opportunity to highlight a vital type of support that is lacking in many parts of the country for these children and their families, but which Julia’s House has helped to pioneer. Most children’s palliative care focuses on end-of-life care, emergency care and some respite, but Julia’s House, in response to parental demand, mainly provides all-year-round, frequent respite care at homes throughout Dorset and south Wiltshire, as well as in the hospice in Poole, in Dorset.
For families with a child with a life-limiting or life-threatening illness, sleep deprivation, exhaustion and anxiety about the child’s health can take a heavy toll on family relationships. Parental break-up rates in families with a long-term seriously ill child vary, but they are known to be higher than the national average. People commonly report isolation, lack of time as a couple or as a family, and physical and mental exhaustion among their worries. Knowing that a specialist service will take the pressure off them for a few hours at a time of their choosing each week can be the difference between coping and not coping. It is even better if the service comes to their own home, as many families cannot easily transport their fragile child.
In the more than 10 years since Julia’s House began to provide this care, evidence has emerged that many parents see frequent respite as a factor in helping them to stay together as they try to cope with their child’s complex round-the-clock care needs. The impact of the frequent respite service and the flexibility afforded by offering much of it in families’ own homes earned Julia’s House the accolade of health care charity of the year at the 2012 national charity awards.
Julia’s House and Bournemouth university are now researching the extent to which frequent respite care helps couples with a seriously ill child to stay together. Their three-year study will conclude in autumn 2015, with interim results available in autumn 2014. Reliable data from the research could point the way towards a change in policy. It is in nobody’s interests, including the welfare state’s, for the parents of seriously ill children to separate. If frequent respite can play a preventive role, and if successful models of support are emerging, health and wellbeing boards should be asked to make frequent respite for families a strategic priority. As well as involving Julia’s House the research project will widen early next year to include client families from a selection of children’s palliative respite providers in England.
When the research started, the Julia’s House chief executive Martin Edwards met officials at the Department for Work and Pensions and the family policy unit to explain the research aims. The officials were naturally interested in tracking the results. I hope that the Department of Health and the Department for Communities and Local Government will take a similarly close interest, along with policy makers in all the main political parties. We all like to talk about reducing family break-up, but we struggle to find levers for that, and the project could provide one. Julia’s House will share the research results with the children’s palliative care sector and representatives of the three main political parties.
Emergency and end-of-life care, whether provided by the state or the voluntary sector, is very important, but it may come after a process of several years. Many children diagnosed with a life-limiting or life-threatening condition will live into their teenage years or beyond, and it is important to make that time as happy as possible. The cumulative effect on parents of sleep deprivation, exhaustion, isolation and anxiety is enormous. Which of us can say that we could survive such pressure?
I want to praise my hon. Friend the Member for Pudsey (Stuart Andrew) for initiating this emotional and important debate. I hope that he will keep smiling; I know that his constituents smile a lot because of the hard work he does in his constituency.
The hon. Lady makes a great point about respite care. The Forget Me Not children’s hospice in Huddersfield opened its doors formally this year, but for a couple of years its nursing teams have been going into the community, helping 50 families. I volunteered with them last summer and remember vividly a single mum with a very ill child, whom they would help two mornings a week. She has not had more than two hours of unbroken sleep in the past six years, and those two mornings a week are the only times when she gets a little time to herself, whether to have her hair done or meet a friend. The contribution of those teams to her life make her a better mum, and help her to care for her child better. It is an excellent point.
That was an excellent intervention. How could any of us maintain a good family life under such unrelenting stress? What a difference that respite makes.
A family in my constituency likened the pressure to slowly drowning, in exhaustion. In their words, “The only name on the life raft reads ‘Julia’s House’.” For families elsewhere in the country, in the numerous places where there is no genuinely year-round respite, there is no life raft. I commend the initiative to the Minister and look forward to her response. The research is likely to show the great benefits to commissioners of spending more money on respite care.
(10 years, 10 months ago)
Commons ChamberT8. Does the Secretary of State agree that we need to learn from the mistakes of the Safe and Sustainable review of children’s heart surgery services and improve the forthcoming review in two ways? First, we should make the process a lot more transparent. Secondly, areas such as neo-natal, paediatric and adult intensive care unit services and transport and retrieval services should fall within the scope of the new review.
I agree that we must learn the lessons. NHS England is responsible for conducting the new review into congenital heart disease services, and it is committed to conducting a review that is robust, transparent and inclusive, in the interests of delivering high-quality, sustainable services for all patients.
(11 years, 1 month ago)
Commons ChamberI am surprised that the right hon. Gentleman wants to talk about the Keogh review before we have made our statement. I am particularly surprised because the Keogh review is the review that Labour never wanted to have, with high death rates in all those hospitals stretching back to 2005 and a record of inaction by Labour. As former—[Interruption.] I think the House might be interested to hear this. as former Labour councillor and Mid Staffs campaigner Ken Lownds said today:
“Can you imagine a Keogh review under Andy Burnham or any Labour Health Secretary? Not a chance.”
5. Whether the new review of children’s heart surgery units will cover adult as well as paediatric cardiac surgery.
I am informed by NHS England that it will include adult surgery in its review of care for people with congenital heart disease.
Can NHS England assure us that a clear link will be shown between the feedback from patients, the public and stakeholders and the final configuration of services in the review of the Leeds children’s heart surgery unit?
Let me first pay tribute to the work my hon. Friend continues to do in support of his hospital and his children’s heart unit. NHS England has told me that individuals and patient organisations have all been encouraged to engage with and contribute to the local review process. The feedback received will be used to help to inform the outcome of the review of children’s heart surgery at Leeds.
(11 years, 2 months ago)
Commons ChamberThe cost to date of the Safe and Sustainable process is about £6 million and Members of this House will rightly ask whether that money has been spent well, given the flaws in the process identified today by the IRP. I would also say, however, that it is right to spend money on carrying out such processes properly. It would be the wrong approach to say that, based on the cost of the process, we are not prepared to consider how we can improve services.
On the timetable, now that the report is public—it is available to Members of the House and the public as of today—I have given NHS England and all stakeholders until the end of next month to come back to me with a revised plan.
I agree with the Secretary of State that families must come first. For me, that means the families of Ben Pogson and Joel Bearder, young constituents of mine who have been treated at the wonderful Leeds unit. Will my right hon. Friend give an assurance that the new review will be based on the fundamental principle of patient choice and that doctors should go where the patients are, rather than the other way around?
Patient choice is very important, but it is also fair to say that there are other considerations in such a review, such as clinical best practice and what outcomes will get the best results for children. We need to be up front with the public that that will not mean specialist children’s heart surgery being offered in every major city in this country. There will be some difficult decisions at the end of the process. The broader point about patient choice, when it comes to considering mortality rates, is that it ties in very well with the concept of peer review. The way we can get better outcomes for children is by being able to compare what happens in different centres, and that is a very important part of the process.
(11 years, 2 months ago)
Commons ChamberDoes the Minister agree that children’s heart surgery units such as the one in Leeds now need certainty so that they can continue to attract the highest calibre of staff?
I agree with my hon. Friend and the sooner we can make a decision and announce it, the better. This issue is of huge importance to the people of Leeds and I want to do all I can to expedite the process.
(11 years, 3 months ago)
Commons ChamberAbsolutely. A lot of good points are being made this afternoon and that is another one. BT and Legal & General are doing a huge amount of work on this. BT does it because it is a decent employer, but also because it wants to hold on to some of its top performers who make a difference to the business. It therefore makes sense to support people and ensure they can stay in work.
We have a fabulous civil society doing wonderful things. The great thing about the area of mental health—it is not all doom gloom; far from it—is the diversity of provision. There are a lot of people out there thinking about different ways of doing things, ways that work for the particular communities they serve. That is to be applauded and promoted. We need to support organisations that provide services that meet the needs of specific groups and their community.
I thank my hon. Friend for lifting the lid off the whole issue of mental health. The more times we talk about it in this Chamber, the more we can break down the stigma. It does not surprise me that he has such a long list of wonderful people and local organisations that are doing great things. I met representatives of the State of Mind campaign, which is running in rugby league. It is not a particularly well paid sport, but the campaign is helping young men who suffer from mental health issues. Will he continue, with me and other Members, to support those organisations and the wonderful people who are breaking down these stigmas?
My hon. Friend makes a fine point. I want to touch, at the end of my speech, on resilience and the terrible tragedy of suicide among young men and women, so I will come back to that.
I remain terribly concerned about psychosis and schizophrenia. I mentioned a few minutes ago that anyone with a diagnosis of psychosis or schizophrenia is likely to be unemployed. If one is not unemployed at the time, one will end up unemployed. Life expectancy, which has already been mentioned today, can be up to 20 years shorter than for someone who does not have that diagnosis. That is not acceptable in a civilised society and should not be tolerated. I have spoken about this before in an Adjournment debate and I want to revisit it because it is so important.
My concern, having talked to people who care for loved ones with schizophrenia—sons, daughters, mothers or fathers—is that sometimes the NHS is more interested in managing the illness than with the overall health needs of the patient. Symptoms are managed down so that patients do not make a nuisance of themselves and take up time, but when one stands back and looks at them, one sees they are desperately unhappy. It does not matter if they are smoking 70 or 80 cigarettes a day, because they are not making a nuisance of themselves. It does not matter if they weigh 20 to 25 stone, because they are not making a nuisance of themselves. It does matter, however, because that patient is slowly killing himself or herself and we have to address that.
I know that the Minister and other colleagues share my concerns, but as a civilised society we just cannot allow this to continue. Yes, progress is being made in the advancement of drug therapies, but not fast enough in mental health. We still have treatments that were breakthroughs in the ’70s and ’80s, but we have not moved on to the 2010s and beyond. The hon. Member for Bridgend rightly said that we have to be very careful about the language we use today and not frighten people. I do not want to frighten people and I hope that she does not think I am, but I get terribly moved when a constituent, who is very ill and being cared for in hospital, writes to me and tells me that once every other week he is held down on the bed and has an eight inch needle injected into his backside. I just think that that must be terribly demeaning, distressing and awful—I am sorry, I am a bit upset about it. We need to get to a place where that does not happen anymore. It will take time, but we need to get there.
(11 years, 5 months ago)
Commons ChamberUrgent Questions are proposed each morning by backbench MPs, and up to two may be selected each day by the Speaker. Chosen Urgent Questions are announced 30 minutes before Parliament sits each day.
Each Urgent Question requires a Government Minister to give a response on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
My hon. Friend is right. One reason why we are tackling this problem is not just the health agenda we have been discussing this afternoon, but that abuse of NHS services fuels broader immigration problems. That is one of the core reasons the previous Government failed to get a grip of net migration in particular.
Calderdale and Huddersfield NHS Foundation Trust spent £305,341 on interpreter services between 2009 and 2011. Will my right hon. Friend include the costs of translation services when working out the costs of health tourism?
I would want to be careful to discriminate between the needs of British citizens and people who are entitled to free NHS care who have not had the education or support they need to learn English but who should still continue to receive free, high quality NHS care, and foreign nationals who are not entitled to free NHS care and who should pay the cost of any translation required.