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.