Queen’s Speech

Baroness Wheeler Excerpts

Wednesday 3rd June 2015 Lords Chamber

[Baroness Wheeler (Lab)]

My Lords, I shall speak about the NHS and fully endorse the deep concerns of a number of noble Lords at how promises in the gracious Speech such as closer working integration, seven-day working and better access to GP and mental health services can be met in the light of the scale of the huge financial and quality challenges facing the NHS, and while social care continues to take such a heavy burden in cuts.

Today, however, I shall speak about NHS specialised services and rare diseases, which present a major challenge to the NHS on no lesser a scale than some of those already referred to. In so doing, I declare an interest as chair of the Specialised Healthcare Alliance, a cross-party coalition of more than 100 patient-related organisations supported by 16 corporate members, which campaigns on behalf of people with rare and complex conditions. The alliance works closely with Members across parties. The noble Earl, Lord Howe, the former Lord Speaker, the noble Baroness, Lady Hayman, the noble Baroness, Lady Jolly, and my noble friend Lady Pitkeathley are all past chairs or vice-chairs of the alliance, so I am part of an illustrious bunch. They have all been strong advocates for quality and coherent specialised healthcare services. Of course, this House has a proud record of pioneering the development of national commissioning and standards for specialised services, under the Health and Social Care Act 2012.

Collectively, tens of thousands of people call on these services for conditions such as HIV, cystic fibrosis, multiple sclerosis, muscular dystrophy, epilepsy, haemophilia, leukaemia and other cancers and renal dialysis, among many others. Alliance membership thus ranges from the larger charities such as Macmillan and the Cystic Fibrosis Trust through to smaller charitable organisations, established by people with close personal experience of a condition and covering such diseases such as Niemann-Pick and Guillain-Barré syndrome. Medium-sized charities in the alliance’s membership support patients requiring complex but not uncommon care. The Terrence Higgins Trust, the National AIDS Trust, the Brittle Bones Society and Roald Dahl’s Marvellous Children’s Charity are just some of these.

Specialised services are a vital part of the NHS, affecting large numbers of patients and their families and often providing the last resort in the care pathway. The annual budget is £14.6 billion, accounting for more than 10% of the overall NHS budget. Services include some of the most advanced technologies and procedures, playing a crucial role in fostering innovation in clinical expertise and service provision. The challenges and opportunities facing specialised services reflect those facing the NHS as a whole. Commissioning and accountability for standards of care are the main two of these.

First, there have been considerable financial pressures on NHS England’s specialised commissioning budget in recent years, arising principally from inaccurate budget-setting based on flawed assumptions about historic spending prior to the last NHS reforms, alongside an overspend in the cancer drugs fund and some increase in specialised activity on the part of providers. Fortunately, the budget is now in balance, but deep concerns remain that new and not-so-new service developments have stayed in the long grass of NHS England’s decision-making structures for an unforgivably long time. In April 2013, NHS England promised a rapid review of the principles underlying its investment decisions in specialised care. Two years on, a not-so-rapid review is belatedly nearing completion, but it took a legal challenge to prompt NHS England into action. In the mean time, patients have been unable to access a whole range of treatments, causing huge concern and anxiety, and in some cases jeopardising their health. Moreover, in future, patients will still need to await the deliberations of NHS England on new services and treatments. I hope the Minister acknowledges that NHS England needs urgently to refine its policy-making processes and ensure that they become robust, timely and efficient, as per the wishes of the patient and the clinical community.

Secondly, and fundamentally, the Health and Social Care Act made NHS England accountable for prescribed specialised services following the confusion and inertia that previously surrounded local budget-holding and accountability, which was vested in primary care trusts. NHS England is now pursuing “collaborative commissioning” for specialised services with local CCGs. Its March guidance on this subject contained mutually contradictory statements, endorsing the role of mandatory national service specifications but also a direction of travel towards place-based—that is, local—commissioning. Although the need for collaboration between NHS England and CCGs to ensure integration between services is fully recognised, this must not be at the expense of NHS England’s clear accountability for the specialised commissioning budget and prescribed services.

We know from NHS clinical commissioners that CCGs will not be bound by national specifications or commissioning policies where they hold the budget for specialised services. IVF, where less than 20% of CCGs commission in accordance with NICE guidelines and an increasing number do not commission at all, shows the potential vulnerability of specialised services in this region. No assurances have been given as to where the budget will lie in 2016-17. NHS England has confirmed that it will develop proposals for place-based budgeting for 2016 and onwards for consideration later this year. This stands in stark contrast to the endorsement of national standards in the earlier commissioning guidance. It is also fundamentally counter to the wishes of the patient community and cross-party consensus under the 2012 Act.

I hope the Minister can reassure the House that the provisions of the 2012 Act will be adhered to in the future provision of specialised healthcare. Pooled resources and expertise must be retained for specialised commissioning at national level. This is absolutely essential to the maintenance of national service standards and clinical access policies across the country, and to providing the services that patients need, depend on and deserve.