Specialised Healthcare Alliance

August 2008

Top-up payments

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.

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discussed how commissioners could influence research and development priorities and the importance of decommissioning outdated services in the NHS.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 Specialised Healthcare Alliance has responded to the National Institute for Health and Clinical Excellence's consultation on the principles it should follow in designing processes to develop guidance.

The proposals build on the 2005 NICE document, 'Social value judgements: principles for the development of NICE guidance'. In its response the SHCA emphasises 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.

The standard and availability of specialised services being fundamental to a properly functioning National Health Service;
The new commissioning arrangements for specialised services being implemented at the earliest opportunity with sufficient pooled budgets attached;
For services and treatments not covered by Payment by Results, pooled budgets are imperative;
The Department should encourage more consistency of provision of specialised treatments across the country by developing the National Definition Set and including standards of care where appropriate;
Where treatment is not approved, the decision-making process should be more transparent and there should be a clear appeals process for patients with support provided;
The Government's strategy for medical research needs to recognise the role of specialised services in providing a pathway for innovation.

The Specialised Healthcare Alliance considers NICE to have a critical role in ensuring that treatment delivered by the NHS is equitable, cost effective and to a uniformly high standard.
The existence in NICE of an independent national forum where decisions about cost effectiveness and prioritisation can be made in a consistent and fair manner is particularly important for patients with specialised medical conditions.
The Alliance believes the Institute's evaluation system should be more transparent. Reform of the process may allow for a fairer consideration of some treatments. In the case of orphan or ultra-orphan treatments social value judgments are likely to be necessary which should rest with parliament.
The Specialised Healthcare Alliance welcomes the recent moves by NICE to ensure lifesaving drugs can be assessed more quickly and supports this process being extended to other technologies.
Unless greater consideration is given to how and when tariffs reflect NICE guidance, patients could face greater delays in accessing recommended treatments.
The Alliance believes that much greater priority should be attached to ensuring the implementation of NICE guidance. If NICE were to assume responsibility for this it would need additional resources.

the establishment of the National Commissioning Group (NCG) on the transfer of the National Specialist Commissioning Advisory Group from DH to the NHS;
SCGs to collectively commission a minimum of 10 specialised services; by 2008/09 SCGs to collectively commission most specialised services for their populations.

To review the current arrangements in the NHS for Specialised Commissioning Groups and Local Specialised Commissioning Groups, as set up following DH guidance in 2002 , and the national commissioning under NSCAG and to identify strengths, weaknesses and existing good practice.
To assess the potential impact of NHS system reform on specialised services and treatments.
To make proposals for improvement in specialised services and treatments commissioning, which fit with work on Implementing a Patient Led NHS, including what should be commissioned nationally
Ensure that proposals keep specialised services commissioning in step with wider NHS reforms and generate consistent arrangements across the country.

Moving up the agenda

Payment by Results (PBR)

The SHCA is concerned about the potential impact of PBR on the provision and quality of specialised services. In some cases, national tariffs seem inadequately to reflect the extra costs of specialist providers. In others, specialist treatments have been excluded from PBR but may be financially squeezed if expenditure within the scheme overruns. The Alliance is therefore working with the Royal College of Physicians to set up a nationwide monitoring panel of clinicians to act as an early warning system. Aggregated results from the panel will be posted on the website at regular intervals as the year unfolds, commencing in the spring.

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News August 2008 Top-up payments 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. 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 Specialised Healthcare Alliance has responded to the National Institute for Health and Clinical Excellence's consultation on the principles it should follow in designing processes to develop guidance. The proposals build on the 2005 NICE document, 'Social value judgements: principles for the development of NICE guidance'. In its response the SHCA emphasises 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) December 2007 Operating Framework 2008-09 The Alliance is delighted that the Operating Framework for the year commencing April 2008 gives renewed impetus to implementation of the Carter recommendations, especially in relation to pooled budgets and designation of providers. The relevant extract states: Specialised services commissioning 3.11 As a result of the Carter Review, the 10 Specialised Commissioning Groups (SCGs) were created to drive up the quality of specialised services, and prevent wasteful or even unsafe duplication of services. For that reason, we expect SCGs to create pooled budgets and to commission the majority of specialised services on their patch this year, extending this to all specialised services in 2009/10. This year, at least half of specialised services commissioned on each patch should be designated, in order to guarantee patient safety and ensure that scarce skills are used effectively. This must be done with a regard to published competition principles and rules. 3.12 In commissioning for world-class health services, SCGs should pay particular attention to areas where significant increases in demand are likely to lead to pressure on services. For example, demand for renal replacement therapy (dialysis and transplantation) is projected to rise by around 5 per cent per year until at least 2030. SCGs will wish to consider options for expanding the provision of satellite dialysis centres and offering more people the option of home dialysis, as well as expanding traditional acute dialysis units. September 2007 NHS Next Stage Review The Specialised Healthcare Alliance has submitted a response to Lord Darzi's review of the NHS. This highlights the need to treat specialised services as an integral part of the NHS and to involve patients and their advocates in any reconfiguration of services with savings directed back into patient care. The Alliance looks forward to working with Lord Darzi and his team in ensuring that the Next Stage Review places appropriate emphasis on these matters in its final report and recommendations. Click for full document (32KB) June 2007 High cost treatments The Alliance has developed a policy statement on high cost treatments, pointing out that the NHS's ability to help those in greatest need must not be weakened by the shift towards greater local accountability for the generality of services. With that in mind, the Alliance is seeking support for: The standard and availability of specialised services being fundamental to a properly functioning National Health Service; The new commissioning arrangements for specialised services being implemented at the earliest opportunity with sufficient pooled budgets attached; For services and treatments not covered by Payment by Results, pooled budgets are imperative; The Department should encourage more consistency of provision of specialised treatments across the country by developing the National Definition Set and including standards of care where appropriate; Where treatment is not approved, the decision-making process should be more transparent and there should be a clear appeals process for patients with support provided; The Government's strategy for medical research needs to recognise the role of specialised services in providing a pathway for innovation. Click for full document (119KB) NICE inquiry The SHCA submitted evidence to the latest Health Select Committee inquiry into NICE. In particular: The Specialised Healthcare Alliance considers NICE to have a critical role in ensuring that treatment delivered by the NHS is equitable, cost effective and to a uniformly high standard. The existence in NICE of an independent national forum where decisions about cost effectiveness and prioritisation can be made in a consistent and fair manner is particularly important for patients with specialised medical conditions. The Alliance believes the Institute's evaluation system should be more transparent. Reform of the process may allow for a fairer consideration of some treatments. In the case of orphan or ultra-orphan treatments social value judgments are likely to be necessary which should rest with parliament. The Specialised Healthcare Alliance welcomes the recent moves by NICE to ensure lifesaving drugs can be assessed more quickly and supports this process being extended to other technologies. Unless greater consideration is given to how and when tariffs reflect NICE guidance, patients could face greater delays in accessing recommended treatments. The Alliance believes that much greater priority should be attached to ensuring the implementation of NICE guidance. If NICE were to assume responsibility for this it would need additional resources. Click for full document (128KB) Future of Payment by Results (PbR) The SHCA has responded to the latest consultation on the future of PbR. The Alliance sees the tariff system as important for both included and excluded treatments, insofar as the latter might be disadvantaged without robust funding arrangements to ensure stable provision. The slow pace of progress in relation to specialised services is therefore disappointing. Click for full document (123KB) December 2006 NHS Operating Framework As the SHCA continues a series of meetings with the new Strategic Health Authorities to discuss implementation of the Carter Report and Commissioning Framework, it is pleasing to note that specialised services feature in the new NHS Operating Framework for 2007-08. In particular: 3.26 PCTs are expected to implement the recommendations contained in the Review of Commissioning Arrangements for Specialised Services , published in May 2006, and set out in the Health reform in England : update and commissioning framework . 3.27 SHAs are expected to ensure that effective collaborative commissioning arrangements for specialised services are in place in good time and that business continuity is maintained. Ten Specialised Commissioning Groups (SCGs) will be in place and the National Specialised Services Commissioning Group (NSSCG) will be established to take forward the priorities for 2007/08. 3.28 Key milestones for 2007/08 are: the establishment of the National Commissioning Group (NCG) on the transfer of the National Specialist Commissioning Advisory Group from DH to the NHS; SCGs to collectively commission a minimum of 10 specialised services; by 2008/09 SCGs to collectively commission most specialised services for their populations. October 2006 Chair of the SHCA Baroness Pitkeathley has succeeded Baroness Hayman as Chair of the SHCA following Baroness Hayman's election as the first Speaker of the House of Lords. Jill Pitkeathley has a distinguished record in public service with particularly strong links to the voluntary sector. In the field of health, these presently include positions as president of the Prostate Cancer Charity and Bowel Cancer UK and as vice president of the Parkinson's Disease Society. Baroness Pitkeathley therefore has a very good understanding of the rationale which underlies the Alliance and the need to ensure successful implementation of the new Commissioning Framework as it affects specialised services. The SHCA also wishes to express its appreciation to Baroness Hayman for the important contribution she has made to its work since 2004. July 2006 Commissioning Framework Publication of the Department of Health's Commissioning Framework this month marks an important step in the adoption of the Carter Report's recommendations on specialised commissioning, most of which have been adopted, though important issues such as revision of the National Definition Set remain to be addressed through other channels. The Alliance will be seeking to work closely with the Department, the Strategic Health Authorities and others to ensure effective implementation of the new structures and processes for specialised commissioning set out in the Framework. The Alliance is also keen to see the earliest possible establishment of the National Specialised Services Commissioning Group, which will have a key role to play in determining priorities and advising on issues such as the development of Payment by Results. May 2006 Specialised Commissioning Report The review of specialised commissioning chaired by Professor Sir David Carter at the request of Lord Warner has now been completed. A copy of the full report can be found on the commissioning pages of the Department of Health website ( www.dh.gov.uk ) . The report's key recommendations are summarised in the attached briefing note. Overall, the Alliance is delighted with the outcome of the review. It is, however, important that the recommendations are adopted in full as part of a coherent approach to commissioning in general and that proper attention is given to effective implementation thereafter. Click here (63KB) December 2005 Review of specialised commissioning As an early contribution to the review of specialised commissioning set up by Lord Warner in October, the SHCA has prepared a commentary on the terms of reference, as attached. Members have since reinforced many of the points made at a stakeholder day held on 2 nd December. EDM 762 on specialised commissioning has also attracted support from more than 120 MPs so far, demonstrating what will be keen parliamentary interest in the outcome of the review. Click here (65KB) October 2005 Ministerial Task Force The SHCA is pleased to be represented on a Task Force which has been announced by Lord Warner, DH Minister of State, to look at specialised commissioning in the context of wider NHS reforms with a view to making arrangements more robust. The Task Force is due to report to ministers by spring 2006 and has the following remit: Overall Objective To ensure that NHS commissioning for specialised services is fit for purpose and robust in the context of NHS system reform. Terms of Reference To review the current arrangements in the NHS for Specialised Commissioning Groups and Local Specialised Commissioning Groups, as set up following DH guidance in 2002 , and the national commissioning under NSCAG and to identify strengths, weaknesses and existing good practice. To assess the potential impact of NHS system reform on specialised services and treatments. To make proposals for improvement in specialised services and treatments commissioning, which fit with work on Implementing a Patient Led NHS, including what should be commissioned nationally Ensure that proposals keep specialised services commissioning in step with wider NHS reforms and generate consistent arrangements across the country. Early Day Motion Meanwhile, Doug Naysmith MP has tabled an Early Day Motion (No 762) on the subject of specialised commissioning. This reads: "That this House notes the large number of people affected by the great diversity of specialised medical conditions; considers that the standard and availability of specialised services is fundamental to a properly functioning National Health Service; recognises the vital role of effective specialised commissioning in delivering a patient-led NHS; and calls upon the Government to ensure that robust funding systems are in place to ensure stable provision for these vulnerable patients." The SHCA is keen for as many MPs as possible to sign the EDM as the Task Force gets underway. July 2005 Moving up the agenda A series of policy developments are combining to move specialised commissioning slowly but surely up the agenda, as summarised in the attached paper. In a debate sponsored by Earl Howe on 11 th July, attention was drawn to the potential impact on specialised services of Payment by Results and Foundation Trusts and to the need for better risk sharing between PCTs . In his response, Lord Warner on behalf of the government undertook to look carefully at specialised commissioning in taking forward wider NHS reform. Click here (74KB) April 2005 Standards for Better Health In a short debate in the House of Lords on 7 April sponsored by Baroness Barker, Lord Warner, responding for the government confirmed that Standards for Better Health published in July 2004 "covers the commissioning by PCTs of specialised and mental health services" and that the Healthcare Commission's assessment system will cover commissioning. He continued: "The Healthcare Commission will be working with primary care trusts in the coming year to develop ways of measuring and assessing commissioning more effectively. The commission is also planning an improvement review into commissioning and, where relevant, it will examine how effectively services are commissioned as part of the review, which will embrace specialist commissioning. The new criteria document that the Healthcare Commission will publish shortly will refer specifically to the needs of specialist commissioning." DH Steering Group The SHCA is pleased to be represented on a DH group looking at ways of strengthening and improving the coherence of the processes for planning, decision-making and performance management at all levels of specialised commissioning within the NHS. March 2005 Creating a patient-led NHS The DH's strategy for implementing the NHS improvement plan shows pleasing signs of putting specialised services closer to the heart of government policy. In particular, there is a commitment to extending clinical networks in a way which is responsive to patients and can introduce new clinical practices quickly. The Alliance looks forward to working with Strategic Health Authorities and the National Leadership Network for Health and Social Care in taking the policy forward. January 2005 SHCA Manifesto In what looks likely to be a general election year, the Alliance has sent its own manifesto to all the main political parties, as attached. In particular, the NHS should be judged by the standard and availability of its specialised services, which affect considerable numbers of people, including some of the most vulnerable in society. Click here (71KB) January 2005 Payment by Results (PBR) The SHCA is concerned about the potential impact of PBR on the provision and quality of specialised services. In some cases, national tariffs seem inadequately to reflect the extra costs of specialist providers. In others, specialist treatments have been excluded from PBR but may be financially squeezed if expenditure within the scheme overruns. The Alliance is therefore working with the Royal College of Physicians to set up a nationwide monitoring panel of clinicians to act as an early warning system. Aggregated results from the panel will be posted on the website at regular intervals as the year unfolds, commencing in the spring. September 2004 Planning Framework 2005-08 The SHCA is delighted that the new DH Planning Framework (National Standards, Local Action) underlines the need for PCTs to collaborate effectively in delivering specialised services. Specifically, paragraph 15 states that in setting local targets: PCTs will need to take into account specialist services which can only be commissioned effectively on a pan-PCT or still broader basis. PCTs , with SHA support, are expected to act collaboratively to secure these services and their improvement. The SHCA will be aiming to build on this important statement in its work with key stakeholders. These include the Healthcare Commission, where the Alliance has sought to identify areas for collaboration in the attached document. Click here (64KB) June 2004 Parliamentary Seminar A wide range of Parliamentarians and others attended a breakfast seminar on 8 June 2004 sponsored by the Associate Parliamentary Health Group. The Rt Hon John Hutton MP, Minister of State at the Department of Health gave the keynote address with additional contributions from the SHCA, London Specialised Commissioning Group and a patient advocate. Click here to read a summary of the meeting. (63KB) April 2004 Healthcare Commission The SHCA welcomes the creation of the Healthcare Commission. Our response to the Commission's corporate plan for 2004-08 highlights a number of ways in which the interests of specialised services could be protected and promoted to the benefit of commissioners, users and providers. click here to read SHCA Response to Healthcare Commission Corporate Plan 2004-08 (46KB) April 2004 Standards in Healthcare The DH has sought views on a range of core and developmental standards for healthcare in England . These are of major importance, not least as a starting point for the work of the Healthcare Commission. The SHCA 's response emphasises the importance of commissioning and specialised services featuring in the standards if the needs of many hundreds of thousands of patients are to be protected as part of an integrated National Health Service. click here to read the SHCA Standards Response (108KB) February 2004 National tariffs click here to read the SHCA's views on national tariffs and how they might affect specialised services.


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© Specialised Healthcare Alliance

News

High cost treatments

NICE inquiry

Future of Payment by Results (PbR)

NHS Operating Framework

Chair of the SHCA

Commissioning Framework

Specialised Commissioning Report

Review of specialised commissioning

Ministerial Task Force

Moving up the agenda

Standards for Better Health

March 2005

Creating a patient-led NHS

January 2005

SHCA Manifesto

January 2005

Payment by Results (PBR)

September 2004

Planning Framework 2005-08

June 2004

Parliamentary Seminar

April 2004

Healthcare Commission

April 2004

Standards in Healthcare

February 2004

National tariffs