The SHCA is a coalition of patient related groups and corporate members with a strong record of campaigning on behalf of people with rare and complex conditions in need of specialised care. They usually meet quarterly, but this month they held two additional events which Lesley, our Patient Support Manager, attended.


On 1st July members of the Specialised Healthcare Alliance (SHCA) met Professor David Haslam, Chair of NICE, and Professor Carol Longson, Director of NICE’s Health Technology Evaluation Centre, to discuss NICE’s work within the broader context of specialised services. The National Institute for Health and Care excellence (NICE) provides national guidance and advice to improve health and social care.

Professor Haslam began by giving an overview of NICE’s history, commenting on how NICE’s work has increased since it was established 15 years ago. It now also covers public health, international health, diagnostics and social care. NICE has also taken over the appraisal of Highly Specialised Technologies (HST) following disbandment of the Advisory Group for National Specialised Services (AGNSS).

Professor Haslam talked about a set of consistent principles, which underpin their increasing responsibilities. To maintain a clear focus on evidence; to convene independent committees for appraisals; to include patients and service users as part of all NICE activity; and to ensure patient views have parity of importance within committee decision making. Whilst following these principles, they strive to be transparent and open. The Board spend a lot of their time discussing ethical issues, especially the need to match demand and supply within a system of limited resource.

Appraising Specialised Services

NICE carry out 45-50 technology appraisals per year, 80% of which relate to specialised services. These differ from clinical guidelines in that they carry a funding directive. This means there is a legal obligation for NHS Commissioners to provide access to such approved treatments within three months of the guidance being published.

The Highly Specialised Technologies (HST) programme evaluates and recommends on the use of ultra-orphan drugs. This can only accommodate 3 or 4 topics at any one time, and as a result the criteria is very strict. Whilst NICE recognised the circumstances of ultra-orphan drugs and the appraisal methodology may be different, their core values continue to support decision making.

NICE directions and instructions are about efficient use of NHS resources, so there are close links with NHS England. However, NICE does maintain its distance from NHS England to ensure independence. NHS England have been very clear about operating within very constrained budgets, and the debate between consideration of the ‘valuable’ and the ‘affordable’ is set to gain pace.

Accelerated Access

The meeting concluded with some discussion on the Accelerated Access Review, which aims to speed up access to innovative drugs, devices, and diagnostics for NHS patients. This is Government led, with NICE feeding into the process.

Hearing the voices of patients, users and their families, and clinicians, is critical to the process. So too is recognition of the key role of research charities as champions. This engagement will show how and whether NICE need to adapt and change to meet expectations.

Future of Specialised Services

On 14th July the SHCA held its fourth major conference at the Queen Elizabeth II Conference Centre opposite Westminster Abbey. Their last conference in 2013 focussed on seizing the opportunities of NHS reform for specialised services. In 2015 with a new Parliament, and the NHS Five Year Forward View, the focus was on the future of specialised services.

The first presentation of the morning was from Roy Trevelion, a patient speaker diagnosed with Still’s disease at the age of 7. His experiences have made him an expert in managing the joint pain and mobility problems of arthritis. He currently works at HIV i-Base, and is an active member of UK-CAB, a network of HIV treatment advocates.

He talked about the fragmented nature of the NHS and the impact this could have on future integration and decision making. He acknowledged GP’s cannot know everything, but it is important to have pathways of information to improve the quality of care.

Improvement and Innovation

Our second speaker of the day was George Freeman MP, Minister for Life Sciences. Since the General Election, he has also taken on responsibility for specialised services. He emphasised the need to accelerate innovation in the system to benefit patients. We are rightly demanding the best from the NHS, but have to be realistic on the limits of funding.

He talked about the Pharmaceutical Price Regulation Scheme (PPRS), allowing the NHS to support effective and innovative use of the budget, whilst adopting a patient centred approach to improve quality and outcomes. They are also working to establish the first Rare Disease Register in the UK.

Meaningful Metrix

John Murray, Director of the SHCA, commented on the hugely controversial Health & Social Care Act. With the constraints of a tight budget, and early transparency having evaporated, there have been two years of little being agreed and large numbers of patients affected.

The vision of the government is to create a system held to account by metrix; a platform to measure and improve outcomes, quality and cost. For example, we will know if our Clinical Commissioning Group (CCG) is not doing well, as the metrix will be available to prove it. The difficulty is, how do we create metrix that are meaningful to patients?

The morning closed with a presentation from Sir Hugh Taylor, Chair of the Accelerated Access Review. It is looking at speeding up patient access to innovative medicines and medical technologies. The whole process is underpinned by patient and user engagement. Key issues being considered are available online, and anyone can keep in touch by signing up for email updates or following them on twitter. They want to involve as many people and groups as possible to explore answers together.

The Cost of Care

Following lunch, one of our speakers was Richard Jeavons, NHS England Director of Commissioning Specialised Services. This year the cost of specialised services to NHS England is £14.7 billion. The innate pressure for growth in expenditure on specialised services is greater than any other, and there’s a need to find ways to be more efficient. Current incentives in the system sometimes prevent services from changing and improving. Financial difficulty of some services is in turn affecting the provision of care.

Some Final Thoughts

We were left with a few things to think about at the end of the day, the following of which stood out for me:

Affordability: How do we stop this from getting in the way of new treatments and innovation?
Patient Involvement: ‘How much as tax payers are we prepared to put in the NHS?’ Patients need to be involved in this discussion
Ethical Balance: How do we balance cost against quality of life?
Future of Healthcare: How will we set ourselves up for the future to ensure we don’t lag behind the rest of the world in allowing access to new drugs?