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December 2011

NHS Commissioning Board needs to lead for others to follow

In a piece for the Health Service Journal on 8th December, John Murray argues that the potential of the NHS Commissioning Board to bring about far-reaching improvements in specialised care depends on a clear vision, strongly communicated from the top.

The article concludes: “Historically, specialised commissioning has been an afterthought in policy.  The extent to which the board lays that accusation to rest will be a good predictor of the overall success of the reforms.  The silence of the 2012-13 operating framework inevitably gives cause for concern.”

Click here to read

 

September 2011

Registries Guide

 One of the recommendations in the Alliance’s report Leaving no one behind (January 2011) concerned the importance of registries in supporting good care and clinical research for people with rare conditions.  The attached guide seeks to support that recommendation by helping patient organisations answer two main questions:

• Would it be useful and practicable for us to set up a registry?
• What are the key issues that we must take into account when setting up a registry?

 To read click here

 

August 2011

NHS Commissioning Board needs to lead by example

In a letter to the Health Service Journal, the Alliance’s Chair, Baroness Pitkeathley, has expressed concern about the absence of detail about specialised commissioning in Sir David Nicholson’s recently published report on developing the NHS Commissioning Board.  The letter suggests that the Board will need to set the highest standards in commissioning services for which it has direct responsibility if it is to exercise effective leadership in the NHS more widely.  This should start with a clear vision for specialised commissioning enunciated at the top.

Click here to read letter

 

May 2011

Rarer Cancer Report

The Alliance held a multidisciplinary workshop on rarer cancers on 31st March in partnership with the National Cancer Action Team.  A copy of the resulting report can be accessed below.  Reports on nine specialised services can be accessed from the reports section of the website.

Rarer cancers report

 

April 2011

An introduction to specialised commissioning

The Alliance’s secretariat has produced a short introduction to specialised commissioning and its recent history up to and including the proposals in the current Health and Social Care Bill. 

introduction to specialised commissioning

 

March 2011

European awareness of rare diseases

An EU-wide survey published on Rare Disease Day (28th February) shows that a relatively large number of Europeans (63 per cent) know what rare diseases are, but that detailed knowledge and awareness are lower (40 per cent had never heard of someone affected by a rare disease).  The European public expresses strong support for policy initiatives linked to rare diseases at both national and European level.  On average, over 90 per cent of Europeans agree that resources should be allocated to support those with rare diseases, improve and coordinate research, ensure access to treatment and raise awareness of rare diseases.  Opinion becomes more divided when other health issues are taken into account but remains supportive.

UK levels of awareness and support tend to be similar or somewhat lower than the EU average.  90 per cent of UK respondent, however, had heard of cystic fibrosis, 82 per cent Huntington’s disease and 81 per cent haemophilia.  These results are significantly higher than the EU averages.

Click here to read full report

 

January 2011

Leaving no one behind

As a culmination of its work on quality and productivity, the Alliance has published a report on delivering high quality, efficient care for people with rare and complex conditions.  The report charts recent developments in policy towards specialised services and sets out a range of case studies before going on to make a series of recommendations.  These include the:

• continuing value of the principles set out in the Carter Report of 2006 as the basis for a coherent strategy towards rare conditions across the UK;
  
  
• need for the doctor/patient relationship to evolve in a way which speeds diagnosis through better referral pathways and the ability of many patients to help inform diagnosis, predicated on well signposted sources of reliable information;
  
  
• role of patient organisations in protecting the vulnerable and driving up standards, sometimes through the provision of more innovative services;
  
  
• need to ensure integrated pathways, especially through the development of multidisciplinary networks;
  
  
• contribution of NICE quality standards or their equivalent to high quality specialised care and outcomes;
  
  
• desirability of outcome measures which capture both clinical and patient perspectives with a view to maximising effectiveness and efficiency;
  
  
• central importance of patient registries, with more sharply focused datasets helping to keep down costs.

SHCA report

 

December 2010

QIPP and specialised services reports

The Specialised Healthcare Alliance has been working with the NHS’s regional Specialised Commissioning Groups (SCGs) to look at services which have been prioritised by the National Specialised Commissioning Group in relation to QIPP (Quality, Innovation, Productivity and Prevention – a policy which aims to deliver quality and productivity at a time of spending constraint).  The Alliance has organised eight service specific stakeholder workshops in conjunction with the relevant lead SCG.  These have been uniformly well attended with strong representation from clinicians, other healthcare professionals, commissioners, patients and patient groups.

The service specific reports on blood and marrow transplantation, haemophilia, HIV and spinal cord injuries, available below, are informed by the discussions which took place at each workshop.  An Executive Summary in each report outlines key findings and recommendations.  A further batch of four reports will be posted shortly.

  BMT Services and QIPP report .pdf  

  haemophilia report .pdf

  HIV Services and QIPP-report .pdf

  SCI services and QIPP-report .pdf

 

November 2010

Delivering quality in specialised care

The Specialised Healthcare Alliance held its second national conference at the Royal Society of Arts on 16th November.  Earl Howe, Minister for Quality at the Department of Health led an impressive array of speakers, while the audience  included extensive representation from inside and outside the Alliance’s membership, including nine of the 10 regional Specialised Commissioning Groups. 

Although uncertainty remains around the commissioning environment which will emerge following the White Paper, there was considerable consensus around certain key issues including:

• The need for the doctor/patient relationship to evolve in a way which taps into the ability of many patients to help inform both diagnosis and care, especially in the field of rare conditions and co-morbidities;
  
  
• The role of patient organisations in protecting the vulnerable and driving up standards, sometimes through the provision of more innovative services;
  
  
• The need to ensure integrated pathways, whether through financial mechanisms or other means such as multidisciplinary networks;
  
  
•  The potential contribution of NICE quality standards or their equivalent to specialised care;
  
  
• The value of patient registries, with more sharply focused datasets helping to keep down costs.    

All were agreed that the quality of specialised services will be a litmus test for the NHS as it seeks to find savings.

 

October 2010

Alliance responds to White Paper

The Alliance has responded to the coalition government’s White Paper “Equity and excellence: liberating the NHS”.  The response welcomes the proposal to place responsibility for commissioning national and regional services as defined by the National Definitions Set with the proposed NHS Commissioning Board.  This has the potential to address a number of shortcomings in current arrangements, as identified by the Health Select Committee in March (see below).  There are, however, a number of important matters requiring clarification.

Click here to see response

 

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. 

Click here to read

 

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.

Click here to read document 

 

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)

The Alliance has submitted comments to the review of top-up payments being conducted by Professor Mike Richards.  The Alliance considers that such payments should be exceptional, keeping the onus on the NHS to provide the best quality of care and treatments.  With this in mind, it strongly endorses moves to speed up NICE appraisals and recommends that the threshold determining the cost effectiveness of treatments should be raised to reflect the considerable growth in NHS expenditure.  Where, despite these and other suggested improvements, the NHS fails to fund a treatment, the Alliance proposes that individuals should be able to do so privately without forfeiting the right to free NHS care, providing their physician considers the treatment clinically desirable.

The Specialised Healthcare Alliance has responded to the National Institute for Health and Clinical Excellence's consultation on the principles it should follow in designing process es to develop guidance.