Palliative Care

Nick Thomas-Symonds Excerpts

Wednesday 4th November 2015 Commons Chamber

[Maria Caulfield (Lewes) (Con)]

I am pleased to have secured this debate tonight on the important topic of access to palliative care for those who are dying. There are three key reasons why this debate is so timely and so important. First, it follows hot on the heels of the assisted dying debate that we had here on 11 September. No matter how Members voted, there was cross-party support for the movement for better access to palliative care in this country. Secondly, it is an important subject because from my experience as a cancer nurse working in one of the best cancer units not only in the country but in Europe, I have seen at first hand the difference that good palliative care can make, not just to patients and their families at the time of death, but in the last few weeks and months, making patients’ lives as fulfilling as possible.

Thirdly, the debate is important and timely because it fits in with the discussion of the Access to Palliative Care Bill in the other place. That Bill aims to ensure that wherever people are in the country and whatever disease they are suffering from, palliative care services are available to them. It would put palliative care services into the mainstream for the many, not the few.

[Nick Thomas-Symonds (Torfaen) (Lab)]

I congratulate the hon. Lady on securing this debate. Should we not see palliative care in its broadest sense, including medical care as well as social care? That co-ordinated approach could make end of life far more tolerable and would mean that people had to go into hospital to a far lesser extent.

[Maria Caulfield]

I agree, and I will highlight that point later in my speech.

For me, palliative care is about support and services that help to achieve a good death and underpin the care in someone’s final weeks and months of life. What happens now is that all too often the provision of palliative care is distributed on the basis not of need but of availability, and depends on the diagnosis, where the person is treated, and sometimes even their age, leading to a patchy and ineffective service. We heard during the Adjournment debate on Monday night about the impact of not having good bereavement services, which stays with relatives not just at the time someone dies but for years afterwards, and may never go away if they have had a bad experience.

This patchy service continues despite all the hard work in recent years reviewing palliative care provision across the country. As far back as 2008, an end-of-life care strategy was produced, and in 2011 the National Institute for Health and Care Excellence produced quality standards, yet palliative care services remain patchy. To highlight that further, let us look at a few more statistics.

Unfortunately, we know that 100% of us will die eventually, and that three quarters of those deaths will be expected. That means that three quarters of the population could benefit from palliative care, but currently only 48% of people who have palliative care needs receive palliative care support. Of the 500,000 deaths that occur in this country every year, 82.5% are among the over-65s, yet fewer than 15% of that group have access to palliative care. That tells us that those who need it most often have the hardest job accessing it. For older people, death is often seen as inevitable and not something that palliative care should be helping with.

More shockingly, between 50% and 70% of people who are dying say they would like to die at home, but only 30% actually do. Most people end up dying in hospital—just over 50%. Hospitals are amazing places, but they are acute settings helping to deal with urgent and emergency cases. While they do need to do more to provide better palliative care, we need to invest in our excellent hospice movement and facilities so that if people want to die in a hospice, they can. We also need to support our community outreach programmes so that if people want to die at home, they can have that choice too.

Cancer Drugs

Nick Thomas-Symonds Excerpts

Tuesday 20th October 2015 Westminster Hall

[Jim Shannon]

I thank the hon. Lady—my hon. Friend—for her contribution, and I am happy to add my support. Indeed, I attended a meeting of the all-party group on off-patent drugs last Thursday, and it is important that we support its campaign.

[Nick Thomas-Symonds (Torfaen) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Hollobone. I congratulate the hon. Member for Strangford (Jim Shannon) on securing a debate on an important issue that affects many families—perhaps all families—across the UK. I intervene at this point because the hon. Member for North Down (Lady Hermon) has mentioned the private Member’s Bill that I am sponsoring—the Off-patent Drugs Bill. Would the hon. Gentleman agree that there are problems affecting the prescription of off-label drugs? It happens inconsistently across the country, and there are problems of information and a conservatism about prescribing off-label. Does he agree that those problems are best dealt with by legislation?

[Jim Shannon]

We have hit on an issue that resonates across the whole House. Let us put on the record the fact that there is a goodly representation of other parties today, and those hon. Members are here because they have an interest in the matter. I am pleased to see the Minister in his place. He tells me that I never miss one of his debates, and I do not know whether this is his debate or mine, but we are both here for the same purpose. I am pleased to see the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), in his place as well.

Survival rates are improving, and that development is great for everyone.

--- Later in debate ---

[Jim Shannon]

As the hon. Gentleman says, there are many good examples across the whole United Kingdom of Great Britain and Northern Ireland, where things are done well. We thank the doctors and nurses, who work energetically, and the many charities.

The national target for accessing these life-changing drugs is 19 weeks. The move in Northern Ireland will go a long way towards enabling the health service there to reach that target. My hon. Friend the Member for Belfast East (Gavin Robinson) was correct that we need to focus on that target. Each day in Northern Ireland, 23 people are diagnosed with cancer and 11 people die of it. According to Cancer Research UK, there were 331,487 new cases of cancer in 2011 and 161,823 deaths from cancer in 2012. That tells us a wee bit about the magnitude of cancer and its importance to every person in the whole United Kingdom. More should be done but I can only welcome the recent developments in the Province. I hope that other areas of the country can follow suit by freeing up the funds necessary and introducing legislation to prioritise fighting this awful disease to the best of our ability.

In England and Wales, cancer remains one of the biggest killers, causing 29% of all deaths. Progress has been made and all progress is welcome, but it is opportunities like today when we can really make a difference to the lives of individuals and families from all walks of life. Recent developments across the water—here—are deeply concerning. In September, 16 drugs were removed from the Cancer Drugs Fund list in addition to another 16 drugs that were removed from the list in January.

[Nick Thomas-Symonds]

I congratulate the hon. Gentleman on making that point. Does he agree with me that the removal of Abraxane from the national Cancer Drugs Fund list is particularly concerning given that pancreatic cancer patients, 80% of whom are diagnosed when the cancer has already spread, are often left with a finite and small amount of life? A drug such as Abraxane can make a significant difference to those people and that decision should—I hope it will—be reversed in future.

[Jim Shannon]

The hon. Gentleman must have helped me put my notes together because I have written that one down. It was one of my next points. Yes, we are concerned about that. I look forward to the Minister’s response on that point because, quite clearly, it is hard to understand why Abraxane should be removed given that it at least extends the life of many people.

Adult Stem Cells and Life Sciences

Nick Thomas-Symonds Excerpts

Tuesday 15th September 2015 Commons Chamber

[Mr Burrowes]

A fine example of a forward step is the progress made by Professor Geoffrey Raisman, director of the spinal repair unit at University College London institute of neurology, whose work could ultimately lead to the repair of spinal cord injuries in humans.

[Nick Thomas-Symonds (Torfaen) (Lab)]

Does the hon. Gentleman agree that the collecting of data at transplantation centres is very important and so is the sharing of it if we are to make progress? There should be greater emphasis on that, and it should be properly resourced.

[Mr Burrowes]

Absolutely, and I will come on to that. The quality of the data that can be shared is important, and the key ask of the Government is to support the call for a national stem cell transplantation network, which will help in that.

However, Professor Raisman’s pioneering work remains underfunded. He hit the headlines in 2014 when Polish surgeons, in collaboration with scientists in London, enabled Darek Fidyka, a man paralysed from the chest down in a knife attack, to walk again using a frame. Professor Raisman said that the achievement was

“more impressive than man walking on the moon.”

Sir Richard Sykes, chair of the UK Stem Cell Foundation, said:

“To fully develop future treatments that benefit the 3 million paralysed globally will need continued investment for wide scale clinical trials.”

We are trying to get to precisely that clinical basis.

Fibromyalgia

Nick Thomas-Symonds Excerpts

Wednesday 1st July 2015 Westminster Hall

[Alok Sharma (Reading West) (Con)]

I beg to move,

That this House has considered treatment of fibromyalgia.

It is a pleasure to serve under your chairmanship for the first time in this Parliament, Mr Crausby. I welcome my hon. Friend the Minister to his place. He did brilliant work in his two Departments in the last Parliament, and I am sure that he will continue to excel during this.

I want to use this debate to throw a spotlight on a not particularly well known or medically well researched, but incredibly debilitating condition: fibromyalgia. I shall set out the views of some of those suffering from the condition, highlight the treatment available to help sufferers and, ultimately, make a few suggestions as to what can practically be done to improve life quality for those debilitated by fibromyalgia.

The last debate that I held in Westminster Hall was on sentencing for dangerous driving. That attracted significant interest from and participation by fellow Members from across the House. As you can see, Mr Crausby, today’s debate has attracted more modest interest. That is not because fibromyalgia is not a serious medical condition, but simply because it is not particularly well known, not least within some parts of the medical community.

[Nick Thomas-Symonds (Torfaen) (Lab)]

Does the hon. Gentleman agree that a critical issue is awareness— public awareness and the awareness of sufferers themselves of what help is available? To give just one example, local support groups can be tremendously helpful. This is a two-track issue: it is about public awareness and the awareness of sufferers themselves.

[Alok Sharma]

Yes, of course; the hon. Gentleman is absolutely right. I shall go on to provide more details of what is going on locally and perhaps what we ought to be doing nationally.

I first learnt about the condition almost by accident a few years ago, through a chance conversation with some constituents. Since then, through the work of the excellent Reading fibromyalgia support group, which meets regularly in my constituency, I have been able to learn more about fibromyalgia and meet many of the people locally who are trying to cope with the condition, as well as medical practitioners who are focused on helping sufferers.

--- Later in debate ---

[George Freeman]

My right hon. Friend is an outspoken advocate for addressing such needs in Wales, in health as in other issues. He will know that pain centres in England are distributed evenly, but they are a devolved matter in Wales and the other devolved Administrations. I will happily write to the relevant people in Wales to highlight the importance of this condition and what we are trying to do in England, and to encourage them to adopt similar best practice. I cannot vouch for their response and, as in other areas, it is a matter for the local Assembly, but I will happily pick that up.

In addition to the specialised pain services that are available, a number of NHS trusts provide dedicated fibromyalgia clinics, such as that at the Royal National hospital for rheumatic diseases in Bath. That clinic offers expert support and advice, as well as a fibromyalgia coping skills programme to facilitate self-management. Some constituents of my hon. Friend the Member for Reading West have raised concerns about the co-ordination of their care; I reassure him and them that improving care and support for people with long-term conditions, and improving the co-ordination of that care, is a central ambition of this Government, as reflected in our mandate to the NHS.

[Nick Thomas-Symonds]

Is there not also a social aspect to this—the issue of sufferers being able to support each other? I am delighted to hear the Minister’s point about co-ordination, because improving co-ordination is crucial to such support being more widely and more consistently available across the UK.

[George Freeman]

The hon. Gentleman makes an important point. Such co-ordination is happening across different therapeutic areas. Charities have a role in providing a strong voice for patient empowerment. Patient networks, increasingly including social media, allow us to advance the voice of disease sufferers in research, treatment and patient support. I am delighted by the news of today’s amalgamation of the two charities, which can only be a good thing for developing wider understanding and a patient voice in new treatment pathways.

We want everyone with a long-term condition— around 15 million people—to be offered a personalised care plan that sets out their needs and preferences for care. Martin McShane, who is responsible at NHS England for improving outcomes for long-term conditions, and Peter Kay, the national clinical director for musculoskeletal care, are working hard to make that happen. I will ensure that the points raised today are passed on to them as part of that work.

My hon. Friend the Member for Reading West mentioned research. Nationally, the Department of Health has substantially increased overall medical research investment from £885 million a year in 2010 to the more than £1 billion allocated for 2015-16. The usual practice of the Department’s National Institute for Health Research, for which I am responsible, is not to ring-fence funds for expenditure on particular topics but to invite and assess research proposals in all areas. Although no fibromyalgia projects are currently funded by the NIHR, the European Commission is contributing nearly €6 million to a project seeking better ways of treating chronic pain, including fibromyalgia. I look forward to the results after the project ends in 2018, and I urge hon. and right hon. Members who are present, FMA UK and the patients it represents to feed their comments into that project and to welcome the results.

We are considering further ways to showcase the world-class research funded by the NIHR, and we are working in this place, and with the public and charities, to drive accountability. I am working with the NIHR to put together a parliamentary open day to allow Members such as those who have spoken today to see where the £1 billion a year is spent, and to work with charities and patient groups on making applications.

A number of colleagues on both sides of the House have talked about discrimination in the workplace, which is a serious concern for people both in my hon. Friend’s constituency and in local fibromyalgia support groups. It is completely unacceptable if patients with long-term conditions are misrepresented as malingerers at work. Historically, we have seen that happen with other conditions, and as research and understanding of the disease develop, we need to be aware that people who present with conditions that are not well understood may be suffering from diseases that have yet to be properly diagnosed. People with long-term disabling conditions are rightly protected from discrimination in the workplace under the Equality Act 2010. Where a disability, such as one arising from a long-term condition, has been established, the Act requires employers to make reasonable adjustments to ensure that the disabled are not placed at a substantial disadvantage compared with their non-disabled colleagues. Failure of an employer in that regard could amount to direct disability discrimination under the Act.

My hon. Friend and a number of others spoke about the establishment of a network of specialist fibromyalgia clinics. We are aware of a number of dedicated fibromyalgia clinics across the UK, including the UK’s leading centre at the Royal National hospital for rheumatic diseases in Bath, but I will write to Martin McShane, the head of long-term conditions at NHS England, to ask whether more formal networks can be established and whether, with the support of active patients and charities, there is more we can do to develop such groups and to help them to support research on developing new treatments and pathways.

I genuinely thank my hon. Friend for his tireless constituency work to raise this issue, and I congratulate him on securing this debate. So much medicine begins with the small voice of misunderstood patients who get together through charities to promote research, raise the profile of a disease in this place and elsewhere, build a head of steam, bid for research projects—the NIHR stands open and ready to receive bids—and build cross-party support. I have no doubt that, in the years to come, this work, this discussion and this topic will come to be seen as one of those occasions when the more we come to understand a condition, the more we drive research on cure and diagnosis and the more we improve treatment across the NHS. I warmly welcome his leadership in bringing fibromyalgia to the House’s attention today.

Question put and agreed to.