NHS Specialised Services

Stephen Gilbert Excerpts

Thursday 15th January 2015 Westminster Hall

[Stephen Gilbert (St Austell and Newquay) (LD)]

It is a pleasure to open this debate and to serve under your chairmanship, Sir David. May I be one of the first to congratulate you on your recent knighthood? “Sir David Amess” looks very good on the name plate. I welcome the many hon. and right hon. Members who have made the time today to come and discuss this important issue. I know that there are many Members who would have been here today, but have other commitments, including my hon. Friend the Member for Meon Valley (George Hollingbery) and my right hon. Friend the Member for North West Hampshire (Sir George Young). They have both contacted me about particular cases and share the general concerns that we will be expressing this afternoon, and I am sure they are not the only ones.

I want to speak up for patients and reflect the concerns of those with rare and complex conditions, whose voice is often not heard. There are two principal issues here: concern over changes to commissioning arrangements for specialised health care and whether it is right that morbid obesity and renal dialysis are no longer considered to be specialised services. The debate comes at a vital time. We are in the middle of a six-month period during which NHS England is developing plans to change radically the way specialised services are planned and funded. NHS England is doing that with remarkable secrecy, militating against external scrutiny. Today is an opportunity to discuss what we know and to test its fitness for purpose.

[Dame Anne Begg (Aberdeen South) (Lab)]

I have to declare an interest as someone with a rare condition. Although I live in Scotland, I benefit from a specialised service delivered by NHS England in Cambridge. Does the hon. Gentleman agree that the importance of specialised services means that they should be managed nationally so that they are not competing against local priorities? That is particularly important for cross-border matters. National management builds expertise—few people know a great deal about my condition—and ensures that there are national standards across the whole of the United Kingdom, and not just in one part.

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[Stephen Gilbert]

The hon. Lady is absolutely right. It is a testament to the value of the House being made up of people from all walks of life and with different experiences that she can bring personal experience to the debate. She underlines many of the points that I will go on to make.

I will reflect the views of patient groups and seek a number of reassurances from the Minister, but first let us define specialised services. They can often be thought of as relatively niche or peripheral and of interest only to those with genetic conditions. Those conditions are of course important, but specialised services extend far beyond that and are relevant to everyone. Collectively, tens of thousands of people call upon specialised services for such things as HIV, cystic fibrosis, multiple sclerosis, muscular dystrophy, epilepsy, haemophilia, leukaemia and other cancers, renal dialysis and hepatitis C, among many other conditions. Indeed, any one of us could have need of specialised services for spinal injury, severe burns or brain injury. It is therefore not simply the rarity of the condition that defines specialised services, although they do serve the smallest patient populations too, but the considerable specialist expertise and cost needed to deliver high-quality services, strategically planned and procured across the country.

Specialised services are a major component of the NHS. Their collective budget for 2015-16 is £14.6 billion, which represents more than 14% of the total NHS budget. Specialised services include some of the most advanced technologies and procedures and play a crucial role in fostering innovation across the NHS with clinical expertise to match. Most importantly, many of the most vulnerable patients rely upon specialised services and would face a life of unmitigated disability and often shortened duration if those services were not procured in a proper way. In short, specialised services help patients and their families in their greatest need and are crucial in keeping the NHS as the world-class service we all want it to be.

As a result, specialised services individually and collectively need careful planning. We are reminded by NHS England to

“think like a patient and act like a taxpayer”,

and with both hats on it makes most sense to ensure that specialised services are planned and managed at the most efficient level, with the requisite expertise and as little duplication of effort as possible. For those reasons, the Health and Social Care Act 2012 introduced significant reforms to the commissioning process—the planning and funding of specialised services. Those particular changes met with unique cross-party support, as well as enthusiastic endorsement from patient groups.

In summary, the commissioning of specialised services was centralised at a national level as a direct responsibility of NHS England. The Government’s impact statement on the 2012 Act said that that was intended to

“reduce management costs and deliver improved outcomes through…streamlining decision-making, funding, planning and commissioning...greater consistency and reducing unacceptable and inequitable access...pooling…expertise, reducing administration costs and a tier of bureaucracy; and enabling consistent approach to service specifications to contain costs and get best value for money”.

That is exactly the point that the hon. Lady made on national standards and having consistent patient experiences across the country.

NHS England was duly established in April 2013, and by the following March it had begun to deliver the Government’s intentions. An NHS England report in March 2014 on hospital compliance with national standards, which sadly is unpublished, said:

“The development of this set of new national specifications and policies, for our services, is a significant achievement given that there was limited national consistency prior to the establishment of NHS England...The development of this set of new national standards and policies is only the beginning of what will be a continuous drive for improvement across all of the services NHS England commissions.”

There was, therefore, a clear picture of how specialised commissioning was developing up to the first half of last year. National funding offered the chance to make improvements across the board, albeit with a recognition that the new system would need some time to bed in and deliver progress in all parts of the country.

We need to talk about what has changed and what the threat is. Since May 2014, NHS England has engaged in a wholesale internal review of its specialised commissioning function. A major driver of that was a deficit in the specialised budget, due primarily to a widely predicted underestimate of what had been spent on specialised services prior to April 2013 and an overspend on the cancer drugs fund. The first of those issues was rectified in December 2014, when the deficit was eliminated by an increase in the baseline budget for specialised commissioning for 2015-16.

That was a welcome development, but what was less welcome were the results of that earlier review and the plans being taken forward by NHS England at the highest level. No commissioning model is perfect and there are benefits and disbenefits to each, but in separating out specialised from non-specialised commissioning, the 2012 Act prioritised excellence in commissioning over a unified commissioning function. In other words, each service was allocated to the commissioning level most competent in meeting the requirements. For example, routine respiratory problems are dealt with by local clinical commissioning groups, but complex and expensive respiratory disorders are planned and managed nationally on behalf of all patients in England.

Asking local commissioners to plan and procure the complex facilities required for rare disorders has been unsuccessful in the past. The high cost of the services and the unpredictability of demand for them can be financially destabilising to local commissioners. It makes no sense for local commissioners in Cornwall or Norfolk to retain expertise in so many fields when they may have few or no patients requiring them. Local commissioners are then at a clear disadvantage in dealing with the large tertiary trusts that possess that expertise and are sighted on their entire customer base across the country.

All that is not to deny that NHS England and local commissioners need to work collaboratively. Indeed, patient groups and others have long called for NHS England to work more closely with local commissioners as it commissions specialised health care. In developing proposals to co-commission specialised services with local clinical commissioning groups, NHS England is going far beyond mere collaboration.

[Mr Russell Brown (Dumfries and Galloway) (Lab)]

The hon. Gentleman and my hon. Friend the Member for Aberdeen South (Dame Anne Begg) have spoken about consistent service delivery. Does he see co-commissioning as something of a problem in delivering that?

[Stephen Gilbert]

There is a huge danger that we will move away from the improved patient experience that we have seen during the past year while national commissioning has been in place for specialised services towards more of a patchwork quilt approach in which patients may not get the same care in different parts of the country or the same pathways to care.

[Dame Anne Begg]

A number of rare diseases are genetic and, therefore, they often come in pockets, which means that some local health commissioners may face a heavy burden while others face none. The beauty of the specialist commissioning is that the cost is spread across the whole country, rather than falling on individual commissioning bodies.

[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.

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[Norman Lamb]

I have hon. Members pleading with me not to give way, but if the hon. Gentleman insists, I will. No—that comes as an enormous relief to everyone.

The hon. Member for Alyn and Deeside (Mark Tami) made some important points about blood cancers and bone marrow transplants. I was interested in his point about the need for more joined-up approaches and services, not only within health, but between health and education. At its best, the proposition being put forward has the potential to achieve that, but I am with him on the ambition for much more integration between public services.

I want now to respond to some key points made by my hon. Friend the Member for St Austell and Newquay. NHS England is responsible for commissioning 147 prescribed medical services on a national basis. Those are specialised services for rare and complex conditions. The services are set out in legislation and commissioned directly by NHS England, through 10 area teams. By commissioning those services nationally, NHS England can commission each service to a single national standard, with single national access criteria, and ensure that patients have the same access to specialised services regardless of where they live in England.

The specialised services that NHS England commissions provide for people with rare or very rare conditions. Therefore, it is necessary to commission those services across a wider population than most CCGs cover—for example, in excess of 1 million people. Specialised services tend to be provided by larger hospitals that are able to recruit and retain clinical and support staff with sufficient specialised knowledge, expertise and leadership. That maximises the provision and co-ordination of care for the relevant patients. The list of prescribed specialised services is kept under review and therefore has the flexibility to change with advances in technology and treatment—such as those that the hon. Member for Luton North referred to.

It is for Ministers to take the final decision on which services should be included on the prescribed specialised services list in legislation and therefore which services are directly commissioned by NHS England. Those decisions are not taken lightly. Expert advice is provided by the prescribed specialised services advisory group—a Department of Health-appointed expert committee established in 2013. NHS England established a specialised commissioning taskforce in April 2014, which my hon. Friend the Member for St Austell and Newquay referred to, to make some immediate improvements to the way in which it commissioned specialised services and to put commissioning arrangements on a stronger footing for the long term. Of course, as I think everyone recognises, such services must be sustainable.

The taskforce aims to improve ways of working and to ensure that the commissioning of specialised services is undertaken in the most efficient and effective way possible. Additional resource from within NHS England has been diverted to the taskforce to ensure that it has the right mix of skills and expertise to enable it to meet its objectives.

[Stephen Gilbert]

As my right hon. Friend will be aware, the taskforce has just suggested that renal dialysis and morbid obesity should come off the list of prescribed specialised services. The decision has been taken over a short period and is due for implementation before the general election, on 1 April. Will he speak to his officials and NHS England about whether further consultation is needed on the decision and whether it could be delayed?

[Norman Lamb]

I take the concerns seriously. My hon. Friend discussed the need for more time in his speech. I will put his representations to officials and NHS England. I cannot go further than that, but I recognise the importance of the issues that he raises and I pay tribute to the work of his constituent Nicola Hawkins in collecting many names on her petition.

Following the work of the taskforce and conversations with key stakeholders last year—from individual patients and patient groups to CCG leaders, area teams and providers of services—NHS England has identified opportunities for improvement. That will affect both what is commissioned and how the services are commissioned.

The NHS England taskforce has identified two areas where there is potential for improvement, and that must be what the process is about. First, it has identified commonly-delivered services that it may be appropriate to devolve to CCGs for local commissioning. Formal responsibility for commissioning those services would be transferred to CCGs. Secondly, in line with the vision of the five-year forward view, NHS England proposes a more collaborative approach to commissioning specialised services, whereby it jointly commissions services with CCGs. That is not a transfer to CCGs—it is joint commissioning. While some highly specialised services will continue to be commissioned entirely nationally, CCGs will be invited to have a greater say over the commissioning of the majority of specialised services.

My hon. Friend intervened on the transfer of commissioning responsibility. The PSSAG met and formulated its recommendations on 30 September. Following proposals from NHS England, it concluded that renal dialysis services and morbid obesity bariatric surgery services did not meet the four statutory requirements—debated in Parliament—for commissioning nationally as part of the prescribed specialised services list, and that therefore commissioning responsibility should be devolved to CCGs. Ministers were minded to accept its advice on changes to the list of prescribed specialised services. Given the changes involved, they felt it was important to engage with stakeholders on the practicalities of transferring the commissioning responsibilities.

The Department of Health launched a public consultation on the logistics and timing of the transfer, which ran from November to 9 January. The consultation asked respondents to consider how a transfer of commissioning responsibility from NHS England to local CCGs could take place, and what would need to happen to ensure a smooth transition while service standards and patient safety were maintained.

We are carefully considering all responses to the consultation, and will respond in due course. NHS England has assured me that it is absolutely committed to issuing guidance to ensure the safe transfer of commissioning responsibility from nationally commissioned services to locally commissioned services, where that is recommended by the PSSAG. It is anticipated that a range of products would make up that commissioning guidance, including national service specifications, national standards and contracting information.

Concerns have been raised and views expressed today and through the consultation about the transfer of renal dialysis services, which I think are the subject of the petition that my hon. Friend referred to. I assure hon. Members that NHS England is in dialogue with stakeholders about both the opportunities and the challenges of transferring responsibility for renal services. Indeed, Dr Paul Watson, the specialised services taskforce lead in NHS England, met stakeholders from renal service representative groups on 18 November to hear their concerns. My noble Friend Lord Howe, an Under-Secretary of State, also recently met all-party kidney group. I repeat that I will relay my hon. Friend’s plea for more time and of course respond to him and other hon. Members.

In addition to the proposals for formal transfer of commissioning responsibilities, NHS England is currently exploring collaborative commissioning—which is what most of this afternoon’s speeches have been about—between NHS England and CCGs, for most specialised services. NHS England has identified the fact that some services will always need to be commissioned on a national basis, including, for example, services that were under the previous arrangements commissioned as highly specialised services. However, a number of services on the current list could potentially benefit from being commissioned on a smaller footprint with greater local involvement, to make joined-up services possible across the care pathway, while maintaining national standards.

One faces a danger when separating off some procedures for national commissioning if other parts of the pathway are commissioned at a local level; that is the case with obesity services, because preventive services are commissioned locally whereas bariatric surgery is commissioned nationally. The danger is that one creates false or artificial divides in the patient pathway, which can damage patient care and create perverse incentives. We have to be cognisant of that and see whether there are better ways of doing things.

NHS England is looking to provide an opportunity for CCGs to begin collaboratively commissioning a number of services in the prescribed specialised services list from April. The approach being taken is a deliberative one that does not impose things on the tight time scale that my hon. Friend was concerned about. Collaborative commissioning would likely be carried out through joint NHS England and CCG committees. It would maintain the expertise—the specialism—but there would be the potential to spread that expertise and build capacity at a local level, which could be in the interests of everyone.

NHS England is aware of several CCGs that would welcome the opportunity to become involved in specialised commissioning, but it is equally aware that many CCGs will not be in a position to take on such increased commitments from 2015-16. There is therefore no question of a return to the previous arrangements.

[Stephen Gilbert]

I remain grateful to my right hon. Friend for giving way, and to other colleagues; this is the last time that I will intervene. I hear what my right hon. Friend is saying. It is reassuring that he is using language about improvements to patient care and the benefits that patients will feel, because there is a danger—I think it is felt by all the patient groups that we have talked about this afternoon—that collaboration becomes buck-passing. I would be reassured if he was giving the undertaking that NHS England will continue to engage with those groups that feel they have not been engaged with already and that improvement to the patient experience is the bottom line in relation to some of these changes.

[Norman Lamb]

I can reassure my hon. Friend on both those points. Openness, transparency and engagement with patient groups are incredibly important, and I would always argue the case for them.

Collaborative commissioning would be an open offer; it would be an opportunity to keep up momentum for high-performing CCGs that are keen to deliver more for their local communities. NHS England is looking to pilot or trial these innovative arrangements in 2015-16—nothing more than that.

NHS England has established a specialised commissioning co-design group, including members of the NHS commissioning assembly, with advice coming from clinical and patient experts, to develop further the details of the collaborative commissioning approach. NHS England will also support CCGs to ensure that the commissioning system remains stable during the transition to any new arrangements.

NHS England is now embarking on a comprehensive programme of patient and stakeholder engagement to support the implementation of these changes; I think the hon. Member for Mitcham and Morden made a plea for that engagement to happen.