Epilepsy

Bob Russell Excerpts

Thursday 26th February 2015 Commons Chamber

[Laura Sandys]

I most certainly do. Addressing stigma is at the heart of the treatment, care and, frankly, funding for epilepsy. Too often it is swept under the carpet. For example, statistically there should be many more Members of Parliament who have declared themselves as having epilepsy. That is because of the stigma and the overall environment for people like me—I am a sufferer, as is my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard)—so no doubt there are more Members of Parliament who have epilepsy.

[Sir Bob Russell (Colchester) (LD)]

Part of the training for first-aiders is how to deal with epilepsy. Does my hon. Friend agree that if first aid were part of the school curriculum, more people would be able to deal with such situations?

[Laura Sandys]

I know that first aid in schools is an issue that the hon. Gentleman is very passionate about. I absolutely do agree. This condition impacts one in every 100 people; it is a very large-scale chronic condition. When a child falls to the floor in school, they need people who are confident to deal with them—who know what the issues are, can calm the rest of the classroom, and understand that this can be managed and supported. If people in authority do not know how to respond—we have examples among the police, those in schools, and even nurses—they feed the stigma, feed the problem, and feed the anxiety around people with this condition.

I feel that we have not done enough to push for greater change and greater focus, and to ensure that Government and the charities have greater ambition for people with epilepsy. However, I think we have done a reasonable amount, and I hope that over time we will do much more in this place and outside.

Stigma is one of the problems. Epilepsy is not trendy; it is not a fashionable condition. It is not information that people volunteer when they make a job application. I can assure Members that one does not talk about it as a set-piece at social events when describing an illness during the week. People with epilepsy frequently try to disguise it; we can see it in their eyes. I have always been very clear about it, because I believe that we should take away the stigma. We cannot normalise it, because it is not a normal condition, but we can make it something that needs to be addressed in equality with other chronic conditions.

Oral Answers to Questions

Bob Russell Excerpts

Tuesday 24th February 2015 Commons Chamber

[Sir Bob Russell (Colchester) (LD)]

10. What guidance he has given to clinical commissioning groups and mental health trusts on jointly funding not-for-profit voluntary and charitable organisations providing support for people with mental health issues.

[The Minister of State, Department of Health (Norman Lamb)]

The Government are clear that voluntary organisations and charities make an important contribution to the delivery of local health and social care services, including services that support people’s mental health needs. However, it is the responsibility of local commissioners to commission appropriate services based on their local population’s needs.

[Sir Bob Russell]

The Minister will be aware that although the NHS is one organisation, trusts seem to operate as silos. Will he convene a meeting of all the trusts in the Colchester area to discuss the future of the Haven project?

[Norman Lamb]

I visited the Haven last week with my hon. Friend, and I was enormously impressed by everything I heard, including the extraordinary testimonies of people with personality disorders who had benefited so much from the Haven’s service. In my view, it would be incredibly sad and very worrying if that service were to be lost. I am happy to invite the clinical commissioning group and the mental health trust to a meeting in the Department to discuss how it can be saved.

Francis Report: Update and Response

Bob Russell Excerpts

Wednesday 11th February 2015 Commons Chamber

[Mr Hunt]

I thank the hon. Gentleman for the close interest he has shown in this issue and the constructive way in which he has engaged with families locally to try to get to the bottom of a really terrible tragedy. He puts it better than I could. We need to implement the recommendations in a tangible and real way so that something actually changes, but we do not want to do it in a way that has unintended consequences. That is why the focus of what Sir Robert is saying this time is not about new criminal sanctions. Although the law has a role—we changed the law on wilful neglect, for example—this is about creating a supportive culture through which people want to listen and learn when others speak out. Of course, if people do not, there should be sanctions, but that should not be the primary motivator.

[Sir Bob Russell (Colchester) (LD)]

I was pleased to be with the Secretary of State last Thursday when he visited Colchester general hospital—one of 19 in special measures—and I am sure he will want to join me in praising the hard-working medical and support staff for all they are doing. He referred in his statement to the “entire NHS” being “committed to patient-centred culture change”, and observed that no one takes responsibility for a vulnerable patient so that the buck gets passed. I suggest that Sir Robert Francis would do well to look at the silo mentality—the reality rather than the rhetoric—in the case of the Haven Project in Colchester, to which the hon. Member for Harwich and North Essex (Mr Jenkin) and I have drawn attention. That is a classic case where the reality does not match the rhetoric.

[Mr Hunt]

Yes, and I remember the conversation I had with the hon. Gentleman about that issue. I will look into the case carefully. I am not saying that the NHS culture is changing today, because I think it is a very long journey. That is why it is important to have cross-party agreement. This is something that will take decades to happen. If we look at the best hospitals in the world, in England or abroad, we find that they get their culture right over decades. We must understand that. Breaking down those silos, putting patients first and making sure that that is not compromised, whatever the external pressures—that is the heart of the matter.

NHS Specialised Services

Bob Russell Excerpts

Thursday 15th January 2015 Westminster Hall

[Stephen Gilbert]

The hon. Lady is entirely right. I will continue to set out the case that she so powerfully makes from personal experience.

In a board paper last November, NHS England published its next steps on specialised commissioning. Frankly, that was to the dismay of patient organisations, some of whom have been involved with specialised services for more than a decade, yet none was contacted or engaged with about the paper’s contents. It set out several principles for co-commissioning, perhaps the most alarming of which was the intention to move towards population accountability and lay the groundwork for place-based population budgets. That would essentially represent a return to the status quo ante under primary care trusts and, therefore, contravene Parliament’s wishes as embodied in the Health and Social Care Act 2012.

In particular, budgets allocated to local populations will usher in that patchwork quilt of provision for patients throughout England that hon. Members have referred to, with varying standards of care to match. NHS England suggests that its national standards would continue to apply, but experience shows that that would be untenable. The history of the PCTs is likely to be repeated, with the clinical commissioning groups going their own ways.

Despite opposition from key stakeholders, which I will touch on shortly, NHS England seems determined to implement its proposals. In December it took the unprecedented step of publishing notional local allocations of its own specialised commissioning budget. The sums have already been done and NHS England is now showing local CCGs the sheer scale of the budget that it expects to make accessible to them. Remarkably, only £1 billion of the £14.6 billion of allocated expenditure for 2015-16 is exclusively for national commissioning. Therefore, more than £13 billion of services that are currently commissioned nationally will be subject to co-commissioning. That is a huge transfer of resources and responsibility in the making, which surely requires prior, not retrospective, parliamentary and public scrutiny. Remember: that is funding for complex heart surgery, teenage cancers and chronic liver and blood diseases that affect some of the most vulnerable people in our community.

Why is this move so risky? First, we can say with certainty that local commissioning of such services does not work. As I alluded to already, before April 2013 responsibility for those services was with local commissioners. The 2006 Carter report brought about significant improvements, but the results remained mixed at best. The Select Committee on Health produced a report on commissioning in March 2010 that reviewed local primary care trusts’ performance in funding specialised services. It found that

“many PCTs are still disengaged from specialised commissioning…In addition, specialised commissioning is weakened by the fact that as a pooled responsibility between PCTs, it sits in a ‘limbo’, where it is not properly regulated, performance managed, scrutinised or held to account.”

In view of NHS England’s intention to move towards place-based budgets, it is also worth quoting the Committee’s remarks on the

“danger that the low priority”

given to specialised services by local commissioners

“will mean that funding for specialised commissioning will be disproportionately cut in the coming period of financial restraint.”

Perhaps because of that, patients’ groups and others have been emphatic in their opposition to local control of the specialised budget. Last year, the Specialised Healthcare Alliance, a coalition of more than 100 patient-related organisations and 15 corporate members that has campaigned on behalf of people who use specialised services for more than a decade, ran a survey of more than 100 representatives of patient groups, companies and expert clinicians that sought views on potential changes to commissioning arrangements for specialised services. It found that 90% of respondents preferred their service to remain part of specialised commissioning at a national level and none favoured leaving specialised commissioning arrangements. It also found that 82% favoured either no change to commissioning responsibilities for their service or for more of their service to be incorporated within specialised commissioning. Only 9% opted for more commissioning responsibilities to fall to CCGs. On co-commissioning, while respondents were open to collaboration between NHS England and local commissioners, only 15% would be happy to see that include pooling of budgets with CCGs.

I am grateful to the Muscular Dystrophy Campaign, the British Kidney Patient Association, the Cystic Fibrosis Trust, the Motor Neurone Disease Association, the Association of British Pharmaceutical Industry, the Royal College of Physicians, the NHS Clinical Commissioners, NHS Providers, the Medical Technology Group, AbbVie and Novartis for engaging with the debate. Uniquely, all the groups that have been in discussion with me share my concerns about the timing and content of these proposals.

Despite the clear views being expressed by the patient community and others, neither NHS England nor the Department of Health has opened any consultation on the developments. No stakeholder events have been held and NHS England has not even published full and explicit details of its plans for co-commissioning.

Given the magnitude of the plans, I hope that my right hon. Friend the Minister will give us assurances today. I ask for specific guarantees to satisfy the concerns that have been raised with me. First, will he commit to ensuring that NHS England will remain the sole budget holder for specialised services? Specifically, will he commit to that not just for 2015-16, but for the years that follow? That is crucial to clear accountability and consistency in those specialised services.

Secondly, will the Minister guarantee that national service standards and clinical access policies will remain in force throughout England, with no variation from the core standards permitted? Again, will he specifically give these assurances not just for 2015-16, but for future years?

[Sir Bob Russell (Colchester) (LD)]

My hon. Friend has been making a powerful case. As he draws to a close, will he join with me and agree that the work of the Prescription Charges Coalition is associated with his comments? Many people with lifetime illnesses and conditions are being subjected to paying prescription charges.

[Stephen Gilbert]

I thank my hon. Friend for his remarks, which are exactly on the money. Every organisation that I engaged with expressed real concern about the proposals. He puts on the record a further organisation that shares concerns on the direction in which NHS England is taking specialised health services.

Will the Minister give a commitment to openness, transparency and public engagement? The Government so often talk about that, yet NHS England has failed to demonstrate it. Will he also promise that any changes to specialised commissioning, including co-commissioning or collaborative commissioning, will be consulted on with patients, providers and the public before they are implemented?

In its leader article this week, the Health Service Journal asks whether specialised services should “pay the price” of NHS changes. It suggests that while that may be NHS England’s strategy, key decisions are being shunted until after the election to keep them out of the spotlight. I submit that this matter is too important to the House for us to see it treated in such a way. We all know that the NHS faces challenges, including those in specialised commissioning, but a policy of stealth is no way to proceed.

I leave the final word to my constituent, Nicola Hawkins, who has been on renal dialysis for eight years and secured more than 35,000 signatures to a petition about plans to remove renal dialysis from specialised provision altogether. She is just one of tens of thousands of people who will be affected. She says:

“I am a single mother of a 13 year old girl, I work full time hours to try and pay the mortgage and I am really struggling. I don’t understand why the changes are being made and I don’t know what the impact will be on my life. I’ve tried to engage with Government but heard nothing back, despite a 35,000 name petition. I don’t have an explanation of why the changes are happening or what they mean for me. I am worried that these changes could mean negative consequences for my health and wellbeing, my ability to support my family and that my care will fall to local GPs who don’t have expertise in my condition. I’m confused about the changes and frightened about the future.”

The changes are happening too fast and without proper consultation. Almost unanimously, they are seen to be a backward step. Nicola and the tens of thousands of people like her throughout our country deserve better.

--- Later in debate ---

[Sir Bob Russell (Colchester) (LD)]

It was indeed a good night for Essex, Sir David; I congratulate you on your well-deserved elevation.

I want to endorse all the comments made by previous speakers. Members will have gathered from my intervention that I do not think that we should look at this matter in isolation. The national health service has a problem: on the one hand, we want local decision making, but on the other, that local decision making is occasionally counter-productive to the interests of patients, so a national framework is required. Clearly, if we have two people in one area and two in another and the decisions are made locally, those decisions could well be different. We all have experiences with mainstream medical services where the postcode lottery kicks in; I fear that that will be exaggerated on a bigger scale for the individual, even though the numbers of people with each condition in each constituency are not that great.

I want to reinforce the arguments that have been made. Last year, I introduced a debate on long-term conditions and prescription charges and concentrated on cystic fibrosis, a condition that I have raised throughout my parliamentary career—I hope that I will be able to continue to do so after May. The point I want to make is that those who have chronic illnesses have not chosen to have them yet, as the Prescription Charges Coalition—a group of more than 30 organisations—has identified, when it comes to prescription charges, there is discrimination against those to whom mother nature has not been kind. At the same time, the NHS falls over itself to assist people who are guilty of self-inflicted wounds, by which I mean illegal drug taking, binge drinking and so on. We have an extraordinary situation in which the NHS gives greater attention, time and resources to those who have brought about their own ill health than to those who did not choose theirs.

My message to my right hon. Friend the Minister is that a powerful case has been made by my hon. Friend the Member for St Austell and Newquay (Stephen Gilbert) and others and that he should look at the case I made in my Adjournment debate last year on prescription charges, with the emphasis on cystic fibrosis. What we have heard today about the ongoing inquiry tells me that the NHS is in danger of moving in the wrong direction. I hope that the Minister, my good friend and fellow East Anglian colleague, will ensure that, regardless of party politics, we are not going to see a worsening of the discrimination currently experienced by many people with chronic illnesses—it is already bad enough.

--- Later in debate ---

[Mark Tami (Alyn and Deeside) (Lab)]

Thank you, Sir David. I thought that I would probably be next. Your knighthood was the very least that you should have been awarded; I think that that was even more creeping than everybody else’s contributions. I thank the hon. Member for St Austell and Newquay (Stephen Gilbert) for securing this important debate.

I will confine my comments to stem-cell transplants. As many other hon. Members have done, I declare an interest, because I am the joint chair of the all-party group on stem-cell transplantation. My eldest son, Max, had a stem-cell transplant some seven years ago, so I also speak from personal experience. Approximately 1,600 patients a year receive a transplant from an unrelated donor or a family member. Transplants are certainly not an easy option. When my son had one, someone asked me, “Why did you take the easy route?” If that is the easy route, I cannot imagine what the difficult route is like. It certainly was not easy; it is a highly risky process and there remains a high chance of mortality. Success rates have improved, however, and great progress has been made over the years. For many patients, a transplant is the only choice that they have to save their lives.

Most blood cancer patients will receive the protocol of chemotherapy and other drug treatments. That will be the preferred route for most patients, and most now have very successful outcomes. For some, however, the protocol is not appropriate and it will not work. Depending on their particular condition, the long-term outcome under that therapy is that they will relapse, so transplant is the only option. Some patients for whom chemotherapy was seen as the correct option will also relapse, and once that has happened, transplant is the preferred option. I emphasise that that is the case for a limited number of people.

Patient experiences and outcomes from transplant are very varied. Some will suffer a whole host of problems, and some may not. There is not a uniform outcome for every patient. The transplant episode, from an NHS point of view, is defined as a period beginning 30 days before transplant and ending 100 days after transplant, and services are commissioned nationally. After that period, funding for patient care returns to the local level, although patients will probably still get ongoing treatment at specialist transplant centres. The period of 100 days may be appropriate for many patients, but it is not appropriate for all. Some patients will have a very different experience and respond differently, and they will not come out the other end fine.

More than 50% of patients will experience graft-versus-host disease. Some minor graft-versus-host is expected, and it at least shows that the transplant has taken and that something is going on; it is fighting to establish a proper graft. If it gets out of hand, however, it can cause organ failure and, in the worst cases, death. The severity of the disease depends on how close a match the transplant is. The best match is always sought, but it can sometimes be difficult. I put on record the great work done by Anthony Nolan in getting people on the register. I emphasise that this is one of the few areas in which it is possible to save a life by giving something without having lost one’s own life, and it is an incredible experience.

[Sir Bob Russell]

Anthony Nolan asking people to go on the donations register is a wonderful aspect of life in the 21st century. Does the hon. Gentleman agree that there is a specific issue for people from ethnic minorities, and specifically for people of mixed ethnicity, because the number of people who can be matched is so small?

--- Later in debate ---

[The Minister of State, Department of Health (Norman Lamb)]

It is a pleasure to serve under your chairmanship, Mr Bone. Your arrival has removed the opportunity for me to be accused of sycophancy along with everyone else who has commended your predecessor in the Chair on his knighthood. None the less, I join in congratulating him, even in his absence. It is good to see you this afternoon.

I congratulate my hon. Friend the Member for St Austell and Newquay (Stephen Gilbert) on securing this debate. His speech was impressive and compelling in making his case, and I hope that I can go some way towards reassuring him. However, I am happy to discuss with him further the concerns that he rightly raised, to ensure that commissioning is done in the best possible way.

Various hon. Members said that any change should be based only on improving care, not simply on cutting cost. Of course, everyone needs to be engaged in the debate about how we make the most effective use of money in the NHS, but we should not do things that damage care, simply to cut cost.

Before I go into the detail of my response to my hon. Friend, let me respond to some of the points made by other hon. Members. I will write to all hon. Members who have participated in the debate to deal with all the points of substance that have been made. The hon. Member for Bristol East (Kerry McCarthy), for example, made a number of key points at the end of her contribution. Hon. Members have had a good opportunity to raise concerns about specific conditions and patient groups, and they have done so constructively.

The hon. Member for Blaydon (Mr Anderson) raised important concerns about neuromuscular care and mentioned the Newcastle centre, and I would be happy to see him at one of my Monday evening MP advice sessions to discuss his concerns further. He also raised concerns about the drug Translarna. My colleague, the Under-Secretary of State for Business, Innovation and Skills, the hon. Member for Mid Norfolk (George Freeman), who is responsible for life sciences, has committed to convene further meetings to seek a resolution of the dispute, and I hope that goes some way towards reassuring the hon. Gentleman.

The hon. Member for Congleton (Fiona Bruce) highlighted the brilliant work of the RSA—an organisation based in her constituency. She said that it had raised millions of pounds for treatments and research and that it was important that such groups have a voice and are heard. I completely accept that, and I hope to provide further reassurance in due course.

A number of concerns were raised by the hon. Member for Poplar and Limehouse (Jim Fitzpatrick)—or is he a right hon. Member? [Interruption.] I think that he deserves to be called right honourable. He referred to sickle cell disease—an important condition that was mentioned by the right hon. Member for Wolverhampton South East (Mr McFadden)—or is he an hon. Member? [Interruption.] He certainly deserves to be called right honourable, and he has clearly been rewarded. He highlighted the need to improve the care and treatment of people who suffer from sickle cell disease.

The hon. Member for Poplar and Limehouse also referred to headache disorders. My wife is one of the many people across our country who suffer from headaches and migraines, so I very much understand their impact on well-being. The hon. Gentleman asked specifically about the possibility of a meeting. Again, I would be happy to see him at one of my Monday evening sessions, but I would also be happy to make sure he and his group are put in touch with officials. I am conscious that the Department’s diary up to the end of March is chock-a-block, but I am sure he could meet officials to take the matter further, as well as meeting me on a Monday evening. I hope that is some reassurance.

My hon. Friend the Member for Colchester (Sir Bob Russell) raised the issue of prescription charges. He is right that there are anomalies—there is no point denying that—and they have existed for a long time. The previous Government looked at the issue, but they did not quite get round to doing anything in relation to long-term conditions, and this Government have also not acted. The constant problem is the pressure on resources in the NHS. People on low incomes are, of course, protected, but he made a valid and legitimate point, and the debate is, rightly, bound to continue. The other point that he made, by analogy, is that any move NHS England makes on this front must not do more damage to people with long-term conditions. I hope to reassure him that that will not happen.

[Sir Bob Russell]

Will the Minister explain what possible justification there can be for somebody with cystic fibrosis having to pay a prescription charge, when they would not have to do so if they had diabetes and cystic fibrosis?

[Norman Lamb]

My hon. Friend makes a legitimate challenge. These anomalies have not been addressed so far, but they need to be at some point. I do not seek to deny his point.

The hon. Member for Mitcham and Morden (Siobhain McDonagh) highlighted the work of Headway, which provides incredible support for people with brain injuries and their families. She mentioned the helpline and the emergency fund, which will be of enormous help to families in the incredibly difficult circumstances they face.

The hon. Member for Bristol East mentioned the Cystic Fibrosis Trust—another amazing patient organisation that does extraordinarily important work. She talked about the importance of equity of access, and it is incredibly important that that principle is maintained in any changes that take place. We do not want to return to the postcode lottery that existed in the past. Again, I am happy to try to provide responses to the questions she asked at the end of her speech.

The hon. Member for Walsall South (Valerie Vaz) was incredibly generous in her remarks about the shadow Minister, and I feel the same about him—let us be blunt about that. I appreciate her kind remarks about me—indeed, the feeling is entirely mutual. She made some really important points about epilepsy and Epilepsy Action. She highlighted concerns about many CCGs and health and wellbeing boards not yet engaging fully in work on epilepsy. That critical issue goes beyond this debate, but I completely take the point that there needs to be a lot more understanding and recognition of the importance of good epilepsy care that follows good practice and addresses the awful problem of so many people losing their lives unnecessarily to this condition.

Oral Answers to Questions

Bob Russell Excerpts

Tuesday 13th January 2015 Commons Chamber

[The Minister of State, Department of Health (Norman Lamb)]

The hon. Gentleman is absolutely right that what happens in social care has an impact on the health service, and the answer has to be to stop seeing them as two separate systems and to look at the whole health and care system. That is why the better care fund is such an incredibly important initiative, pooling a substantial sum of health and care funds, and it must go further so that we end up pooling the entire resource.

[Sir Bob Russell (Colchester) (LD)]

T6. The last Government abolished community health councils, a truly independent health watchdog and voice for patients. Their replacement, the patient advice and liaison service, is not independent. Does the Minister agree that PALS must be made independent?

[Norman Lamb]

PALS was not the direct replacement of community health councils; a different scheme was set up for the patient and public voice independent of hospitals. My hon. Friend raises important concerns about PALS and the Government are intent on looking at the service to ensure that it performs effectively for patients.

A and E and Ambulance Services

Bob Russell Excerpts

Thursday 18th December 2014 Commons Chamber

[Mr Hunt]

It is funny how the hon. Lady talks about the closing of A and E departments without talking about the opening of A and E departments and the improvement of facilities. The plans for north-west London involve significant improvements, including weekend opening of GP surgeries, which is one of the key things that the shadow Front-Bench team has talked about as something that will help A and E departments. As for what is happening specifically, I was disappointed with the CQC report about the A and E at St Mary’s, but I gently say to her that it was this Government who set up an independent inspection regime with a chief inspector who gives the public information in a way that they did not have before. I think that is the biggest spur to making sure that the right changes are made quickly.

[Sir Bob Russell (Colchester) (LD)]

The general public will not have been impressed with the political posturing from the shadow Secretary of State. Does my right hon. Friend agree that a significant number of people who go to A and E should not be there, and as part of his long-term NHS planning, does he agree that if first aid were taught as part of the national curriculum, fewer people would go to A and E?

[Mr Hunt]

I commend my hon. Friend for championing this cause. He is absolutely right that we need first aid. I think that my hon. Friend the Member for Brigg and Goole (Andrew Percy)—I am not sure he is here—is a first responder, and I want to commend him for the work he does in that respect, because it makes a big difference in emergency situations if we can people to patients more quickly.

NHS (Five Year Forward View)

Bob Russell Excerpts

Monday 1st December 2014 Commons Chamber

[Mr Hunt]

There are huge pressures in the NHS. By the time of the election, we will have nearly 1 million more over-65s than there were at the last election. That means that people have to redouble their efforts to live within their means. At the same time people are trying to deliver the higher standards of care that we have talked about following the Francis review of what happened in Mid Staffs. It is challenging, but we expect all trusts to live within their budget. In all cases, they have recovery plans that we expect them to stick to.

[Sir Bob Russell (Colchester) (LD)]

I pay tribute to the medical and support staff at Colchester hospital for their work to bring it out of special measures. Twice the Secretary of State referred to focusing on prevention. May I suggest that a contribution to that admirable aim would be for first aid to be included in the national curriculum for schools?

[Mr Hunt]

No one campaigns more for first aid than my hon. Friend. I would certainly encourage all schools to teach first aid, as I think it is a very important skill and we should consider that as part of the prevention agenda. There is also a broader point, which is that we can do a lot with the Department for Education on this agenda.

Cystic Fibrosis

Bob Russell Excerpts

Thursday 10th April 2014 Commons Chamber

[Kerry McCarthy (Bristol East) (Lab)]

Thank you, Madam Deputy Speaker, for this opportunity to discuss an issue that is important not just to me personally and to my family, but to those constituents who have families or friends with cystic fibrosis and have written to me recently in support of the Cystic Fibrosis campaign. I thank also the Cystic Fibrosis Trust and the Bristol Adult Cystic Fibrosis Centre for their assistance in preparing for today’s debate, and those with whom I trekked across the desert in Jordan back in February to raise funds for the Cystic Fibrosis Trust. I am so grateful to the many people who sponsored me on that trek and, in particular, to those constituents, many of whom were not known to me personally, who were very generous with their contributions.

I chose to join the trek because I have a nine-year-old niece, Maisie, who has cystic fibrosis. Almost everyone who went on that trek to Petra had a relative, spouse, partner or friend with CF. so as well as being a fantastic if physically challenging experience, it was also useful for me, as we went through the mountains and the desert, to speak to people about their experience of dealing with family and friends with CF.

CF is an inherited disease that affects more than 10,000 people in the UK. One in 25 people carries the CF gene, and if both parents are carriers there is a 25% chance that their child will have CF—so one in 2,500 babies born in the UK has cystic fibrosis. My niece was diagnosed on Christmas eve when she was only a few weeks old. She had been losing weight and her parents were worried so they took her into hospital. But, thankfully, since 2007 newborn babies have been routinely screened, and that is very welcome.

CF is a genetic deficit that causes the production of thick mucus which predominantly affects the lungs and digestive system. The symptoms include a persistent cough, breathing difficulties and repeated chest infections. It also affects the pancreas, meaning that fatty foods in particular and fat-soluble vitamins are not digested or absorbed properly, causing malnutrition, poor growth and diarrhoea. This means that people with CF generally need between 20% to 50% more calories than average, and one third of them go on to develop CF-related diabetes.

Treatment varies because the condition can vary from person to person. Some people are not diagnosed and do not realise they have the symptoms of CF until they are an adult, as was the case with one lad on the trek with me. He was in his mid-20s and had been diagnosed at 18, so he had a milder form of the disease without the pancreatic symptoms. Treatment can vary according to how severe a person’s condition is, but it usually involves daily time-consuming physiotherapy, an oral nebuliser and, occasionally, intravenous antibiotics and having to take enzyme tablets when food is swallowed.

Patients are susceptible to cross-infection, which sadly means it is not a good idea for people with CF to come into contact with each other. That is where online forums have become valuable, because people with cystic fibrosis can now talk to each other about their condition. I want to flag up the Twitter account @CFAware, which I have only just come across. It retweets people who have contacted it with anecdotes about how cystic fibrosis affects their lives and about their treatment. It has been really valuable to me in informing me about the illness.

Cystic fibrosis used to be known as a childhood disease because life expectancy was so short. When the Cystic Fibrosis Trust was founded in 1964, a child born with CF was not expected to live beyond the age of five. Advances now mean that half the people with CF are expected to live beyond 41 years, and the life expectancy continues to rise—indeed, I was told the other day that a child born today with CF could expect to live into his or her 50s. That progress is, of course, very welcome, but it has implications for people with CF and their families, and for treatment and public policy, which I want to focus on this afternoon.

One recent breakthrough was the development of ivacaftor—the brand name is Kalydeco—a tablet treatment that addresses the genetic causes of CF, but that is valuable only for those with the G551D mutation, who comprise just 4% of CF patients. For them, the fact that this drug is now available reduces CF to a manageable lifelong condition—it is something they can live with, rather than a deteriorating condition—so the confirmation that this drug would be funded in England from January last year was an unimaginable relief. The drug demonstrates why investment in research and drug development, and in gene therapy, is so crucial. If a drug were found that could help the remaining 96%, the cost of providing it could be prohibitive, but of course that should not prevent our carrying out the research and continually trying to find better treatment, better genetic experiments and, ultimately, a cure for CF.

In the more immediate term, patients need a focus on the care and support available to them. Bristol is fortunate to have both a specialist paediatric centre at Bristol children’s hospital and, next door, an adult CF centre at the Bristol Royal infirmary, where I met staff and patients when I visited last week. It has a multi-disciplinary team comprising consultants, nurses, dieticians, physiotherapists, pharmacists, psychologists and a social worker. It was clear from my visit that each and every member makes a vital contribution to the treatment and well-being of CF patients there. The dieticians’ input is crucial in trying to help them maintain a healthy weight and deal with the added complication of diabetes. Psychologists are there to help with the psychological impact of having a life-limiting disease or the trauma of waiting for a lung transplant—that is an issue I will return to later. The medics I met also emphasised the importance of the social worker’s role.

The team also helps patients and families cope with the transition from paediatric to adult services at the age of 18. That comes at a time when not only are teenagers struggling with all the usual things that teenagers struggle with and they are perhaps making that transition into managing the condition themselves—by carrying out their own physiotherapy and administering drugs themselves, rather than having their parents do it for them—but their condition is likely to start deteriorating. Young adulthood is often the time when there is a dramatic decline in the health of CF sufferers, so having expert specialists, as well as exercise facilities and in-patient beds, at the specialist unit in Bristol, in a dedicated space for CF, which stops the risk of cross-infection, too—patients have their own rooms—is really important.

It is important to remember that many patients are trying to balance employment with their treatment: 70% of adults with CF who completed an employment questionnaire for the CF Trust were in work or education. Many of these patients are trying to administer treatment, such as IVs, at home and have to struggle with the equipment; they are trying to manage the costs of travelling to the specialist centre; and they may well be trying to apply for the assistance to which they are entitled from the Department for Work and Pensions. Indeed, the financial pressures are considerable, and one consequence of CF having been a “childhood disease” is that it was not included in the prescription charge exemptions, so patients now reaching adulthood face significant bills for their cocktail of medication. As we know, the prescription charge increased last week to £8.05.

[Sir Bob Russell (Colchester) (LD)]

I hope that when the Minister responds she will explain why successive Governments refused to acknowledge the very strong arguments that the hon. Lady has made about how the disease was once a childhood condition whereby people never made it beyond being teenagers but now people make it to adulthood and they are having to pay prescription charges—if they are in employment—to stay alive. People who abuse their body and become drug addicts receive state funding, but people who have been served by mother nature in this way do not get the help. The Government should give that help.

[Kerry McCarthy]

I thank the hon. Gentleman for his intervention. I know that he has campaigned on this issue for many years. To people who think that early-day motions are a magic bullet that will solve things overnight, I point to the hon. Gentleman, who managed to get an early-day motion calling for the removal of prescription charges for cystic fibrosis patients. I think that his early-day motion has been No. 1 on the list for many, many years, but it has not yet managed to progress. He also had a debate on the issue last year. I sometimes use him as an example of how early-day motions do not automatically mean that the Government will sit up and listen, but I hope that the Minister will listen today and hear our plea.

The previous Prime Minister, my right hon. Friend the Member for Kirkcaldy and Cowdenbeath (Mr Brown), recognised this issue, and his Government committed to phasing out prescription charges for people with long-term health conditions, but we did not manage to do it before the 2010 general election.

Some people with cystic fibrosis will be forced to make the difficult decision to give up work, but research conducted last year by the Cystic Fibrosis Trust with Parkinson’s UK, the Multiple Sclerosis Society and the National Rheumatoid Arthritis Society reported that Atos found 45% of people with these progressive conditions fit to work. Obviously, it has now been belatedly acknowledged that the assessments carried out by Atos were far too unreliable. Most worryingly, some people with cystic fibrosis were given “prognosis reports” of when they would recover from the illness—an illness from which it is impossible to recover.

Critically, welfare reforms may increase the barriers to getting to work and hospital appointments—not least the new personal independence payment and the 20 metre mobility limit. A survey of people with CF found that more than a third would no longer be able to work if they were not awarded the higher rate of mobility under the new PIP, while 90% said they would find it difficult to access hospital appointments. In a survey for the Cystic Fibrosis Trust, a third said that they would not be able to attend hospital appointments. The trust also warns that patients fear isolation and loss of independence, which would affect their mental health.

When I visited the Bristol adult cystic fibrosis centre last week, it was explained to me how the trust and the centre fundraise to help the service and the patients. For instance, they buy more nebulisers to lend to patients. The ordinary nebulisers are huge and cumbersome, but the nice neat little ones are far more expensive. The trust and centre want to help patients manage their condition with the least amount of inconvenience. They fundraise to buy the smaller nebulisers. They also buy physio equipment, because it is really important for CF patients to undertake exercise to loosen up the mucus on their lungs. They buy fridges for patients’ medication and desks for their rooms—as I said earlier, patients need their own rooms to avoid cross-contamination.

The Bristol centre is clearly making an invaluable difference to its patients’ lives, but it has a growing patients list, which is due in part to the very welcome increases in life expectancy. I understand that Bristol’s patient numbers are increasing in line with the national average—by around 10% each year—and the patient case load has doubled over the past six years to around 200. I think the Manchester centre has about 600 patients and is the largest in the country.

With the Bristol centre, the transfer of patients from further afield, such as from Taunton and Swindon, has contributed to the growth in numbers. This year, it is also taking on patients from Cheltenham and Bath.

Patients are often admitted for a course of intravenous antibiotics, which they will generally need about three times a year, with the antibiotics being administered about three times a day for a couple of weeks. Some patients can self-administer at home, but that is not always appropriate or safe, depending on their living conditions and how ill they are. Sometimes it may just be that they have not been monitored by the team for a while, so they will be admitted to the centre. I met a young woman who had just started work. She had an understanding employer. She had been in her new job for two weeks and then decided that she needed to go into hospital to have the intravenous antibiotics. She felt much safer there than administering a course of treatment at home, which was her normal way of doing things. The condition clearly requires considerate employers.

It seems that hospital admissions at specialist CF centres are becoming increasingly difficult to plan for and more prone to cancellation because the units cannot guarantee a bed will be available. It seems that, particularly in winter months, the specialist beds also come under pressure from other departments, which have a shortage of beds. Ordinary patients may be put in a CF unit, and the CF patients cannot get the treatment that they need. In Bristol, the annual number of in-patient “bed days” required by patients for their IV antibiotics has increased from just over 500 in 2005 to nearly 2,500. That is due to the number of patients, and not because the length of stay is increasing.

Over the past few years in particular, there has been a steeper rise in the number of bed days at home, which is now at more than 3,500 annually. The unit is trying to facilitate more self-care at home and has developed an outreach service so that patients do not always have to travel to Bristol. It also tries to offer community liaison and health care at home, for example to help with IVs, and is developing innovative ways to help patients, including through an agreement with BUPA to deliver supplies to the homes. There can be a huge amount of equipment and pills and so on, and patients who have to use public transport to get to the hospital, perhaps not feeling very well as they are travelling, do not want to have to carry huge amounts of drugs and equipment around with them. That delivery service is proving very useful. Staffing and resources, however, mean that the centre has limited capacity for outreach and community services.

Importantly, the University Hospitals Bristol NHS Trust is working with the centre and has increased funding for specialist staff but, more generally, the Cystic Fibrosis Trust told me that specialist CF centres around the UK are reporting that resources, personnel and space provision are inadequate and warns that in light of the increasing patient numbers nationally, the lack of capacity for in-patient beds, combined with a lack of funding for out-patient staff, threatens to curtail the clear progress made over the past few decades. I would therefore be grateful if the Minister could update us on the Department of Health’s plans to ensure that CF services are equipped to keep up with increasing patient numbers and the complexity of the condition and assure me that she will work with the Cystic Fibrosis Trust, the specialist centres and their expert staff. Will she also consider the issue of co-ordination between trusts? For example, CF patients who phone an ambulance will often not be taken to the specialist centres even though their consultants recommend it.

Some patients will be assessed and referred for a lung transplant and, as the Minister will be aware, last month the Cystic Fibrosis Trust launched its “Hope for more” campaign. Although a lung transplant is not appropriate for everyone with CF and does not cure it, it can mean the priceless gift of a few more years for the patient and their family. Tragically, though, one in three people with CF on the lung transplant waiting list will die before they can receive one, so the Cystic Fibrosis Trust is campaigning to maximise the use of organs and increase the number of organs available for transplant.

One tragic case was that of Kerry Thorpe, a very brave young woman who became the face of the organ donor campaign. She died only a few weeks ago at the end of March at the age of 23, because new lungs could not be found for her. She spent seven years on the waiting list. Today, I was sent an account from the Daily Record of another 23-year-old, Lynette Armitage, who had a lung transplant in December in an eight-and-a-half-hour operation. She asked surgeons whether she could have a photo of her old lungs when they removed them, but they told her that the lungs had completely disintegrated when they had taken them out. They were only held together by her rib cage and the surgeons said that if she had not had a transplant within the next two weeks, she would have died. The lungs got to her just in time. It might be that she lives for another seven years or so, which is the average, but some people who have had transplants can live into their 50s or 60s. She is talking about having a normal life, having children and looking forward to going to T in the Park this year. That just shows what a difference can be made if lungs can be found: two 23-year-olds with very different outcomes.

There are a number of ways to reduce the length of time people are waiting and, critically, to reduce the number of deaths. That includes increasing organ donation rates and promoting more public discussion of organ donation. Less than a third of donors are registered, so it is not necessarily an obstacle if someone is not on the register. The Cystic Fibrosis Trust reports that the UK has one of the highest rates of family refusal in the western world. I am not suggesting that this is an easy decision for bereaved families to make during such a difficult and emotionally charged period, particularly if the family member has died suddenly, but it is nevertheless an indication of the need to focus on consent as well as registration and to ensure that more people understand what an incredible and generous gift they can give to other people if they sign up to be donors.

The organ donation taskforce led to a 50% increase in the number of deceased donors and a 30.5% increase in transplants in the five years to 2013. That was important progress, but I am sure the Minister will agree there is still more to be done. I would be grateful if she could update us on the “Taking Organ Transplantation to 2020” strategy and the latest assessment of the case for an opt-out system. I know that Wales is moving to a system of presumed consent next year.

As the Cystic Fibrosis Trust has highlighted, it is not only a case of increasing donor rates, as significant numbers of donor lungs are not used, despite the next of kin giving their consent. Lungs from fewer than 25% of donors after brain death are utilised in transplantation. Medical innovation means that more lungs could be used, and the trust has called for more transplant surgeons to be trained in downsizing donor lungs. It has also funded a study at the university of Newcastle on ex-vivo lung perfusion, a technique for the assessment and potential repair of sub-optimal lungs. That was explained to me as a service where damaged lungs are reconditioned so that they are fit for use in transplants. I urge the Minister to consider the results of that study, and whether such techniques could increase the number of suitable donor organs.

In recommending the development of a national lung allocation system, the report focuses on a concern amongst the cystic fibrosis community about the equity of lung allocation, and whether they go to those most in need, irrespective of where the person lives. I am aware that NHSBT has developed a new super-urgent group, separate from the main waiting list, but the Cystic Fibrosis Trust emphasises that that is unlikely to have a significant impact on people with cystic fibrosis waiting for a transplant. It also highlights the evidence from the USA, where the introduction of the lung allocation system led to an increase in the number of transplants and a significant reduction in the number of people with cystic fibrosis dying while on the waiting list.

Accident and Emergency Departments

Bob Russell Excerpts

Tuesday 10th September 2013 Commons Chamber

[Mr Hunt]

That contract set in train a process whereby it became easier and easier to access an A and E department, and harder and harder to access a local GP. Since that period we have had, I think, 3 million more people going to A and E every year than was the case at the time of that contract change. That is one of the underlying problems. It will take time, but we shall put that problem right.

[Sir Bob Russell (Colchester) (LD)]

I recently spent the whole evening on the night shift of the A and E at Colchester general hospital, and I do not recognise what we have heard from the Labour Front Bench today. As the Secretary of State is keen on alternatives to A and E, may I urge him to work with the Secretary of State for Education and implement first aid training as part of the school curriculum? Within a generation, we would have 1 million qualified first-aiders. That is one way of reducing unnecessary visits to A and E.

[Mr Hunt]

My hon. Friend has campaigned regularly on this subject and there is a lot of merit in what he says. We do need more young people to know the basics of first aid, and that can be extremely important—even life-saving. But we also need to ensure that the NHS is there when we need it, 24/7, and that is why we need to make some important changes to the way in which A and E departments operate, in both the short term and the long term.

Hospital Mortality Rates

Bob Russell Excerpts

Tuesday 16th July 2013 Commons Chamber

[Mr Hunt]

It is not playing silly political games to expose poor care; it is doing my duty as Health Secretary, and that is what I will continue to do. Improving systems, such as making sure there is safe staffing, is very important. It is ridiculous in this day and age that someone can be admitted to A and E but that department cannot access their GP record, and cannot see whether they are a diabetic or whether they have mild dementia. Those are things we are determined to sort out.

[Sir Bob Russell (Colchester) (LD)]

On 6 February, the Prime Minister asked Professor Sir Bruce Keogh to review the quality of hospital care. Although Colchester is only one hour from London, Sir Bruce did not make a single visit in the five months that elapsed. Although, obviously, I welcome the Secretary of State’s observation today that for Colchester general hospital this is more of a green light than a red light, will he do what Sir Bruce did not do and visit the hospital, so that he can, in the words of the panel, meet a large number of “committed and enthusiastic” staff?