Organ Transplants

Debate between Luciana Berger and Sandra Osborne

Tuesday 8th July 2014 Westminster Hall

[Luciana Berger]

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?

[Sandra Osborne (in the Chair)]

Order. I am sorry to interrupt the hon. Lady, but I ask her to be mindful of the fact that the Minister has many points to answer in the debate.

[Luciana Berger]

My hon. Friend the Member for Bristol East referred to the international comparison that suggests that there is room for improvement in ensuring that we are making the most of donor organs. The Cystic Fibrosis Trust has pointed out that a large number of donor lungs are never used, despite consent from the next of kin. Lungs from fewer than 25% of brain-dead donors are utilised in clinical transplantation. The need for suitable organs must be balanced against possible risks to the recipient, such as transplanting an organ that does not work properly or transmitting a serious disease from donor to recipient. However, I echo the concerns raised by my hon. Friend the Member for Stretford and Urmston (Kate Green) on donor lungs: there are clinically viable lungs within the 75% that are not used and more can be done to address the issue.

Anxiety over the likely function of an organ largely explains why it is only in a minority of cases that all possible solid organs are used. The Government strategy for organ donation and transplantation, published last year, highlighted that sometimes actions that could be taken to improve the function of a retrievable organ are not taken and the organ is declined. On other occasions, organs declined on the grounds of poor function should have been accepted and implanted. What steps are the Government taking to ensure that we are using as many donor organs as possible? I also echo and reinforce the points made and questions raised about supporting patients who are waiting for organs to ensure that, when the time comes, they are psychologically prepared.

This issue is important to all Members, across the political divide. Anyone in this room could one day need an organ donation or have a loved one who does. We are making progress but we must maintain our momentum. I welcome the Government strategy for organ donation and transplantation set out last year. I am happy to work with the Minister and do all I can to promote efforts to improve organ donation and transplantation, to ensure that anyone who needs an organ transplant has one. I look forward to the Minister’s response.

Hospices (Children and Young People)

Debate between Luciana Berger and Sandra Osborne

Wednesday 18th December 2013 Westminster Hall

[Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)]

I begin by congratulating the hon. Member for Pudsey (Stuart Andrew) on securing this debate on a topic about which he is clearly passionate. I pay tribute to him and to all the members of the all-party parliamentary group on hospice and palliative care for the work that they have done to bring this important issue to the fore.

As we have heard, there are 49 children’s hospices across the UK, which all do fantastic work for young people and their loved ones. As my right hon. Friend the Member for Rother Valley (Mr Barron) said, much of the hospice movement is supported by volunteers and millions of pounds of charitable donations. Many hon. Members from both sides of the House made passionate representations on behalf of their local hospices and the holistic care that they provide. Hon. Members have raised many powerful points, and I hope to touch on several of them. I want to focus on three points covered in the debate. First, I will set out the full scale of the care crisis facing young people with complex health and care needs; secondly, I will explain why that is an issue not simply for individual families but for society at large; and thirdly, I will touch on some of the areas that need attention to make life better for those young people, particularly those receiving palliative care.

As we have heard, more than 40,000 children and young people in England have palliative care needs. That includes children suffering from curable and chronic conditions, children with severe disabilities, and children and young people nearing the end of their life. That represents a 30% jump over the past 10 years. There has been a particularly marked increase in the number of 16 to 19-year-olds requiring palliative care, as we have heard from several hon. Members, to around 4,000 young people, which accounts for roughly 10% of young people under the age of 19 with complex care needs. That is in many ways a positive sign, because it demonstrates the great advances made in science and medical technology, and the fact that they have resulted in people living longer.

Cancer accounts for around 14% of young people diagnosed. Cancer Research UK figures show that five-year survival rates for teenagers and young adults have risen significantly across all cancers across the past 25 years. In the late 1980s, less than three quarters of young men lived longer than five years after having cancer, but the rate is now better than eight in 10. For girls and young women, the five-year survival rate now stands at 84%. There has been a particular improvement in leukaemia; the survival rate has jumped from less than 50% to more than 60%.

We are moving in the right direction, but as we have heard from hon. Members today, that presents a particular challenge, because more young people live beyond the reach of children’s care and transition into social care. Too many young people who receive care from children’s services turn 16, 17 or 18 and then fall off a cliff during the transition to adult social and health care. The right hon. Member for Chelmsford (Mr Burns) and the hon. Member for Pudsey highlighted the specific challenges facing young adults, and we heard an emotive quote from Lucy Watts, who summed up the situation well. Much more needs to be done to make the transition work better. Some of my constituents who have accessed wonderful services at the Alder Hey children’s hospital struggle when the health professionals and familiar surroundings that they have been accustomed to for so long change—a point that my hon. Friend the Member for Rotherham (Sarah Champion) articulated. Many families are shocked by the reduced support that they receive in many aspects of adult social care after they have made that switch.

Transition is a hugely stressful process, and in most cases families are moving from dealing with a single, comprehensive agency to managing several different agencies with up to four points of contact. It is easy for gaps to emerge in that fragmented process. Many conditions reach crisis point in late adolescence, so it is all the more important that young people and their families receive responses from care and health agencies in an appropriate, sensitive and timely fashion. There are too many instances of people having to endure the agony of being put on hold, or waiting for a reply to an e-mail, when their loved one has an urgent care need.

That is all in the context of a crisis in adult social care. Since 2010, £1.8 billion has been cut from council budgets for adult social care, and we await the impact of the local authority settlements which have been released today. That means that fewer people receive help with paying for their care and more people face increased charges for vital services that help them to get up and get washed, dressed, fed and helped to bed at the end of the day.

Let me make a brief comment on the wider costs to society. Demand for care is growing at a time when resources are being reduced. The costs to society of a bad care transition—whether those costs take the form of greater illness, negative social and educational outcomes, or possible early death—are far greater than the cost of putting in place adequate resources to ensure a good transition. I welcome some of the modest measures that the Government—[Interruption.]

[Sandra Osborne (in the Chair)]

Order. The sitting is suspended for a Division for a minimum of 10 minutes.