News
September 2010
The challenge of rarity – putting the N in the NHS
The Alliance has published a report on England’s new approach to commissioning health services, products and technologies for small patient populations. This includes recommendations calling for:
- clarity about the criteria determining whether a product or technology will be assessed under the new arrangements or by NICE. These might be expected closely to reflect the new Advisory Group on National Specialised Services’ decision-making framework;
- transparency in the process, so that all parties can see the major factors influencing decisions about which products and technologies should attract funding;
- a holistic approach, which demonstrably weighs all the complex considerations governing health gain, societal value, reasonable cost and best practice;
- robust regional arrangements for those services, products and technologies neither suitable for commissioning at national nor local level;
- ethical consistency in decision-making across the NHS drawing on the framework as a template.
Companies also need to show responsible commercial behaviour in responding to society's wish to help people with very rare conditions in great clinical need.
Click here for the full report
August 2010
SHCA conference on delivering quality in specialised care
At a crucial time for the future of specialised services, the Alliance is delighted to announce a top line-up of speakers for its conference on 16th November looking at how to deliver the best quality of care for people with rare and complex conditions during a time of financial constraint.
The conference is aimed at a broad audience and will be seeking to deliver some tangible progress towards core quality standards for specialised services covering issues like diagnosis, treatment, care, commissioning and outcomes.
Click here for the full programme and booking form
July 2010
White Paper
The Specialised Healthcare Alliance is pleased to see that the White Paper (Equity and excellence: liberating the NHS) published on 12th July provides for national and regional specialised services to be commissioned by the proposed National Commissioning Board, rather than GP commissioning consortia. In particular, this approach has the potential to address the current shortcomings in regional commissioning identified by the Alliance in its evidence to the Health Select Committee earlier in the year.
Clearly, there are important issues which remain to be addressed and these will be picked up by the Alliance in its formal response but the White Paper represents an encouraging development for specialised commissioning.
June 2010
Ethics – can we afford them?
The Alliance hosted a special session on 24th June at the NHS Confederation Conference in Liverpool. The speakers were Professor Rod Griffiths, Chair of the National Commissioning Group and Nicolaus Henke, Director of McKinsey’s health practice. Professor Griffiths focused on the new ethical framework which has been developed to support decisions about national commissioning of services, products and technologies. Mr Henke touched on the proposed new shape of commissioning arrangements in the NHS and highlighted the increasingly specialised nature of healthcare. Members of the audience agreed that the ethical decision-making framework broke important new ground and could be of value to the wider NHS.
June 2010
SHCA conference on quality in commissioning
After its successful gathering in 2008 on high cost treatments, which helped to inform the development of an ethical decision-making framework for national commissioning, the Alliance is holding a second conference at the Royal Society of Arts in London on Tuesday 16th November. This time attention will focus on delivering quality in the downturn. Early speakers include Earl Howe, Minister for Quality and Paul Corrigan.
To receive more information please contact: enq@shca.info
March 2010
Health Select Committee backs Alliance on specialised commissioning
The Health Select Committee’s report on commissioning has now been published and includes an important chapter on specialised services, providing important backing for the Alliance’s analysis of the strengths and weaknesses of current arrangements. In particular it:
- Acknowledges significant improvements in specialised commissioning since the Carter Report of 2006;
- Highlights the regulatory limbo occupied by SCGs and the threat posed to funding for specialised services as NHS funding is squeezed;
- Recommends that the Department of Health undertake a review of the problems surrounding implementation of Carter, taking into account the Alliance’s proposal that regional Specialised Commissioning Groups should be re-located within Strategic Health Authorities and funded directly.
To see the full report click here 
March 2010
CMO speaks out on rare disease
The Alliance is delighted that Sir Liam Donaldson has taken the opportunity of his last annual report as Chief Medical Officer to highlight the importance of rare diseases both in terms of their frequent severity and the cumulatively large number of people affected. Sir Liam's recommendations chime with the Alliance’s call to renew and reinvigorate the Carter reforms, proposing to:
- Strengthen the network of reference centres for rare diseases to enable better coordination of specialist services, including the transition from paediatric to adult services.
- Ensure that adequate numbers of specialists are trained so that future service needs can be met.
- Appoint a National Clinical Director for rare diseases to oversee the development of clear standards and pathways for the treatment and surveillance of rare diseases, with national registers to support service planning and delivery as well as research.
- Strengthen research, including translational research with economic incentives, to develop and market medicines for the ‘orphan diseases’.
- Raise public and professional awareness of this neglected group of diseases.
- Support international collaborative efforts to share information and resources for rare diseases.
To read the full report click here
February 2010
Commissioning inquiry
The Specialised Healthcare Alliance was joined by other witnesses on 14th January in giving oral evidence to the Health Select Committee about specialised commissioning. The Alliance believes that the evidence submitted by a wide range of witnesses has borne out the importance of robust specialised commissioning structures at regional and national level, along with the need to renew and reinvigorate the Carter reforms.
Click here to read the uncorrected transcript
The results of the Alliance’s survey of SCGs which helped inform its evidence to the inquiry have also been collated.
December 2009
National Commissioning Consultation
The Specialised Healthcare Alliance welcomes the Department of Health’s consultation on measures to strengthen national commissioning, including the approach to funding decisions for very specialised new technologies. The rationale for the proposals and the parallel development of an ethical framework chime closely with the results of the Alliance’s conference on high cost treatments in November 2008 and subsequent work. We will be considering the document carefully before submitting our comments by the closing date of 19th February 2010.
Click here to read the consultation document
October 2009
Health Select Committee
The Specialised Healthcare Alliance has submitted evidence to the House of Commons Health Select Committee, which is conducting an inquiry into NHS commissioning. The Alliance is delighted that the Committee is looking at specialised commissioning as part of its terms of reference for the inquiry given its importance to the large number of people affected by rare diseases and other complex conditions.
Click here to read the Alliance’s submission
August 2009
General Election Prospectus
The Specialised Healthcare Alliance has reviewed its priorities for the next Parliament, which are summarised in the attached document. In particular, the Alliance wishes to see:- A minister with responsibility for specialised services;
- Comprehensive designation of specialised providers with robust pooled budgets to pay for them;
- Proper regulatory oversight of specialised commissioning through the Care Quality Commission;
- An ethical framework applied consistently across the NHS in relation to funding decisions.
May 2009
Rare diseases, complex conditions and the limits of localism
In the 11 th May edition of the House Magazine, Baroness Pitkeathley seeks support across all parties for some key Alliance objectives up to and beyond the next General Election.
Click here to read (120KB)
January 2009
High cost treatments
Following the Alliance's successful conference at the Royal Society of Arts on 18 th November 2008, members have agreed a framework of ethical and other considerations to help inform best practice in decision-making on high cost treatments at all levels within the NHS.
Click here to read (38KB)
October 2008
NHS Constitution
The Specialised Healthcare Alliance has voiced its support for the draft NHS Constitution but proposed two important changes concerning the uptake of innovation and a right to access both local and specialised NHS services. The Alliance also favours a separate statement of accountability including Parliament's role in shaping the balance between the needs of the individual and society in allocating limited tax revenues.
Click here to read the NHS Constitution response (40KB)
August 2008
Top-up payments
Click here to read the response (26KB)
June 2008
Whose money is it anyway?
The system of funding specialised services is in need of review - that was the view of delegates at the Specialised Healthcare Alliance's event at the annual NHS Confederation conference in Manchester on 20 June. In a lively debate among commissioners, providers and others, there was recognition of the limitations of the method of top-slicing PCTs to fund specialised healthcare at the national level.
Mark Cooke, Chief Executive of Dudley PCT and Dr Stephen Waldek, Medical Director of Salford NHS Foundation Trust were the speakers at the event, where delegates also discussed how commissioners could influence research and development priorities and the importance of decommissioning outdated services in the NHS.
Click here for a full summary of the event (48KB)
June 2008
French EU Presidency set to prioritise rare diseases
The Specialised Healthcare Alliance has welcomed news from France that the country has issued a new set of actions after its 2005-2008 National Rare Disease Plan. France was the first European nation to implement a rare disease plan, which has since been taken as a model by others. The plan includes measures to provide support for medical and non-medical products for patients with rare diseases. France is also set to assume the Presidency of the European Union on 1 July 2008 and is planning to take action to improve the care of rare diseases throughout Europe, including a series of events throughout the year.
Click here for more information
June 2008
SHCA conference on high cost treatments
The Specialised Healthcare Alliance has announced the line-up for its November 2008 conference on high cost treatments. Supported by the Genetic Interest Group and the Royal College of Physicians, the conference will explore the pressures on the NHS in its provision of high cost treatments and the consequences for patients.
Speakers will include Lord Darzi, Parliamentary Under-Secretary of State at the Department of Health, Chris Reed, Chair of the North East Specialised Commissioning Group and Joan Saddler, Director of Patient and Public Affairs at the Department of Health.
Click here for more information
April 2008
Who will stand up for rare conditions?
Specialised Healthcare Alliance director John Murray has argued in a recent article for the Health Service Journal that the NHS needs to be better equipped to treat rare conditions.
He writes: " the cumulative number of people suffering from all rare conditions is considerable. No official figures exist, but we are talking about hundreds of thousands of people. That is why specialist medicine is central to a functioning health service."
Click to download the article (81KB)
March 2008
NICE's social value judgements
The proposals build on the 2005 NICE document, 'Social value judgements: principles for the d e velopment of NICE guidance'. In its response the SHCA emphasise s that a better balance needs to be struck between the various factors mentioned in the Secretary of State's directions to NICE, including the degree of clinical need and the impact on innovation as well as cost effectiveness.
Click for full document (81KB)
February 2008
Survey of specialised commissioning groups
The Specialised Healthcare Alliance conducted a survey of Specialised Commissioning Groups in the autumn of 2007 to assess early progress in implementing certain aspects of the Carter recommendations, as adopted by Ministers in July 2006. The results show that a good start has been made but that much remains to be done in relation to the number of services collaboratively commissioned, the pooling of budgets and public and patient involvement.
The Alliance looks forward to maintaining and strengthening its links with Specialised Commissioning Groups and others as they seek to deliver on this key component of World Class Commissioning.
Click for full document (317KB)
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