National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) (No. 2) Regulations 2014

Lord Hunt of Kings Heath Excerpts

Tuesday 6th May 2014 Lords Chamber

Moved by

[Lord Hunt of Kings Heath]

That this House regrets that the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) (No. 2) Regulations 2014 create arrangements for the management of services for very rare conditions that are much more fragmented than those in place prior to the Health and Social Care Act 2012; and further regrets that the process by which services for rare and very rare conditions are considered by the Prescribed Specialised Services Advisory Groups and NHS England for commissioning nationally are unclear and lacking in openness and transparency. (SI 2014/452)

[Lord Hunt of Kings Heath (Lab)]

My Lords, I am grateful to have the opportunity to debate services for very rare conditions. The House has long had an interest in those rare conditions and, indeed, in specialised services more generally. During our debates on the Health and Social Care Bill in 2012, we had extensive discussions about how to protect specialised services. Of course, the funding of those services is at the moment the subject of much debate because of the overspending under the auspices of NHS England. That clearly emphasises some of the problems arising because of the changes brought about by the Health and Social Care Act 2012.

Rare diseases are more of a feature of healthcare in the United Kingdom than many people think. Indeed, I understand that there are reckoned to be about 6,000 such diseases, and it is calculated that 6% of the population have such a rare disease, but each separate disease can affect fewer than 500 people. Those diseases can often involve some of the most vulnerable patients; given the small patient numbers and clinical complexity involved, it can be difficult to plan and manage. I understand that work has shown that four in 10 patients with a rare disease report difficulty in getting a correct diagnosis and then face similar challenges with obtaining suitable treatment.

Prior to the 2012 Act, these services were commissioned by a single national specialised commissioning team, subject to approval by Ministers on advice from the Advisory Group for National Specialised Services. That single commissioning team could draw on advice from the advisory group’s broad multidisciplinary membership to ensure high-quality service developing. The advisory group itself benefited from the bespoke ethical decision-making framework appropriate to considerations of products and services for such small patient populations.

Under the new system, responsibility for highly specialised services has been fragmented in a number of ways. Services are planned by an advisory group within NHS England called the rare diseases advisory group, while new highly specialist technologies are due to be developed and evaluated by NICE under a new methodology currently under development. Separately, the prescribed specialised services advisory group advises Ministers which services to instruct NHS England to commission, including new highly specialised services, such as in the statutory instrument that we debate this afternoon.

Apart from the complexity of these new arrangements, a number of problems have been identified by the Specialised Healthcare Alliance. First, the separation of these complex and interrelated functions between different national agencies risks the loss of efficiency and expertise in planning highly specialised services. As an example, links between NICE and NHS England would need to be extraordinarily close given that many highly specialised services are heavily dependent on high-cost, low-volume drugs.

Further, changes to the commissioning of these services present additional causes of concern. Rather than retaining a single national commissioning team to manage relationships with providers of highly specialised care across the country, delivery is now delegated, I understand, through NHS England’s four regional offices, with contracts held by the 10 area teams with responsibility for specialised commissioning which have providers on their patch. The alliance has expressed concern that cohesive oversight of these services is likely to be undermined in the process and may even introduce a greater degree of clinical risk. The efficiency of the arrangements, moving from one national to 15 different teams with a greater or lesser involvement, also seems highly debateable. As an example, where access to a service across the country is dependent on only three or four providers, problems at one will have an immediate consequence on the others as well as on patient referrals.

The prescribed specialised services advisory group advises Ministers on changes to the scope of specialised services to be prescribed in regulations for direct commissioning by NHS England. Under the terms of the 2012 Act, Ministers prescribe services for NHS England to commission directly, including specialised services, while all the other non-prescribed activity falls to clinical commissioning groups to commission for their local populations. In prescribing a service as specialised, four factors in the Health and Social Care Act 2012 are taken into account: the number of individuals who require provision of the service; the cost of providing the service or facility; the number of persons able to provide the service or facility; and the financial implications for clinical commissioning groups if they were required to commission the services or facility themselves. Ministers receive advice from the advisory group hosted within the Department of Health to inform such changes. However, this has not been at all transparent. Indeed, in its first year of operation, the advisory group was hidden from public view. It was not until 2 May 2014 that the first details of its membership, decision-making processes and recommendations were published. A few members of the alliance have campaigned to secure inclusion of their services as specialised services but were taken by surprise by the publication of this statutory instrument as they did not know that the advisory group had issued a recommendation to Ministers.

The noble Earl may have good news for us about the publication of a report on this matter either today or in the past few days. As it reached me by e-mail this morning, I have not had time to read it, and it is certainly not available in the Printed Paper Office. That is a pretty poor do if we were meant to have it in time for this debate. It is very important that this work is transparent. I hope the noble Earl can give us more assurance on that this afternoon.

Will the noble Earl respond to the evidence given by the NHS England chief executive to the Commons Select Committee on 29 April, in which Mr Simon Stevens suggested that the scope for specialised services had been overextended and needed to be reviewed? The noble Earl will know that the overspend by NHS England is causing great concern in the health service not only because it suggests that NHS England has lost control over the commissioning of specialised services but because the resources have had to be taken from other parts of the health service. Clearly, this position is not sustainable. I would be grateful if the noble Earl would respond to that question.

--- Later in debate ---

I hope that I have been able to reassure the noble Lord, Lord Hunt, in particular about his concerns, not least around transparency, which, as I have indicated, we are determined to address. I thank all noble Lords who have spoken about these important issues. I hope that they are reassured by what I have been able to say today.

[Lord Hunt of Kings Heath]

My Lords, first, I thank the noble Earl for his response, and the noble Baronesses, Lady Brinton and Lady Thomas, and the noble Lord, Lord Walton, for taking part in the debate. I say to the noble Baroness, Lady Brinton, that of course the Motion was drafted well before the publication of the report. In fact, I received notification of the report only this morning. She seems to have got hold of it before me. Obviously it is helpful to have the report, which I have no doubt we will study, but I hope that this will be the start of an engagement between the advisory group and Parliament, and I hope that the advisory group will offer an open meeting for parliamentarians in the near future where we could discuss these matters with it.

The noble Lord, Lord Walton, was absolutely right to remind us of the increasing importance of ensuring that we have appropriate mechanisms for providing services and funding for these very rare diseases, particularly as technology advances and given the likelihood of orphan drugs being required more in the future.

I had hoped that I might identify a way to fund some of these services, but the Minister has told me that the money has perhaps been discounted and is already in the system. I say to him, however, that the low uptake by the NHS of innovative new medicines is a major problem. Alongside the issue of AstraZeneca, we have to persuade and cajole the NHS that it has to change its approach to new medicines. My own experience is that increases in staffing, in units and in medical equipment are all regarded as a good thing but that an increase in the drugs budget is seen per se as a bad thing. This, frankly, is nonsensical given what many drugs can bring to the public. The fact is that we have a hugely innovative R&D and pharmaceutical industry in this country which we should be very proud of, but the NHS has a lamentable record in investing in the output of that R&D industry. This is a very serious issue from the point of view both of patients and of our continued success—one hopes—as a country in attracting that R&D investment in the future. My understanding is that, in research and clinical trials in the future, unless we are able to compare innovative new drugs with what would in many countries be the normal drug usage, we will find it even more difficult to have clinical drugs started in this country. This is a very serious issue and we have collectively to tackle it.

I note what was said by the noble Baroness, Lady Thomas, who made some very powerful points. The noble Earl, Lord Howe, believes that the current system is not fragmented in the way that I described. Obviously, we will have to see whether this proves to be the case in the future, but there is a risk, with four regional and 10 area teams, of pretty widespread inconsistency within those teams and areas. We need to keep that under very close review.

I am very grateful to the alliance for its briefing and the work that it does. I wonder whether Ministers would be prepared to meet the alliance to discuss our debate and the advisory group’s report. I have already asked whether the advisory group would be prepared to meet parliamentarians. I am grateful to the Minister for expanding on the comments made by Simon Stevens to the Health Select Committee about the overspend on specialised commissioning. NHS England is not very visible in the Palace of Westminster and it should become more so. Before it makes pretty fundamental decisions on specialised commissioning, it would be very good if it was again to agree to meet parliamentarians to discuss it. This has been an excellent debate. I beg leave to withdraw my Motion.

Motion withdrawn.