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Archive of: 2015

  • Specialised Services Commission - Call for Evidence

    The Specialised Services Commission is an expert working group convened by former Health Minister Lord Warner to examine the current challenges and opportunities facing NHS specialised care.

    As an independent short-life working group, the Commission will make recommendations to the Government, NHS England and others about the future direction of travel for over £15billion of specialised services.

    The Commission is seeking written submissions from any stakeholders wishing to contribute to expert assessment of the future for NHS specialised care.

    A paper to help inform written submissions is available here: Specialised Services Commission – Call for Evidence

    Please send all submissions to by Friday 29th January 2016. The Specialised Healthcare Alliance is supporting the Specialised Services Commission by allowing the use of its secretariat, without prejudice to the Commission’s independence.

  • SHCA responds to consultation on changes to NHS England's Mandate

    The Specialised Healthcare Alliance has submitted a response to the Department of Health’s recent consultation on its Mandate to NHS England.

    In particular, the Alliance’s submission calls for an objective explicitly focused on the need for NHS England to account for its performance in commissioning of £14.7billon of specialised services.

    The Alliance welcomes the consultation document’s provisions on improving outcomes and reducing health inequalities but is keen to ensure that these apply equally across all patient populations, from the smallest to the largest.

    Furthermore, the Alliance argues that the Mandate’s particular focus on financial considerations must not create an environment in which the pursuit of clinical excellence and safety is secondary to the need to make savings.

    The response also focuses on the potential impact of regional devolution arrangements, looking in particular at the likely changes to structures of accountability across the health service.

    The SHCA’s response to the consultation can be found below.

    SHCA response to NHS England Mandate consultation – November 2015

  • NHS England publishes PPVAG minutes following SHCA campaign

    The Specialised Healthcare Alliance today welcomes NHS England’s publication of the minutes of its Patient and Public Voice Assurance Group.

    This represents the culmination of a long process of publication and is a welcome step for the transparency of patient and public voice within NHS specialised commissioning.

    Over the last year, members of the Alliance have repeatedly called for these and other NHS England meeting minutes to be published in the interests of transparency. NHS England had agreed to do so in principle but this was followed by repeated delay.

    The Alliance will continue to campaign for greater transparency across NHS England’s specialised commissioning function to ensure that patients and the public can best engage with decisions about specialised care.

    The Patient and Public Voice Assurance Group’s minutes can be found here.

  • SHCA 2015 Conference Report Available

    A full report of the Specialised Healthcare Alliance’s 2015 conference is now available. This covers speeches on the future of NHS specialised care from the Minister for Life Sciences, the Chair of the Accelerated Access Review, NHS England’s Director of Commissioning Specialised Services and Professor David L. Hayes of the US-based Mayo Clinic Care Network.

    Key themes to emerge from the day were:

    • The importance of stability in specialised commissioning, improving policy development processes and support for Clinical Reference Groups
    • The opportunities heralded by innovation for specialised care, both via the Accelerated Access Review and with the potential of new technologies to enable local care delivery with specialist support.
    • The need for collaboration between national and local commissioners, without prejudice to NHS England’s position as accountable commissioner and budget-holder.

    The Alliance will build on this event through a series of workshops across the country later this year, intended for a broad range of stakeholders – more information is available from

    The full report can be read here, with the presentations from the day available here.

  • Major specialised services conference line-up confirmed – tickets available

    The full speaker line-up has been finalised for the Specialised Healthcare Alliance’s conference on Tuesday 14th July in Westminster. The conference provides a key opportunity to understand and inform the course of specialised services and commissioning in the new parliament.

    The Minister responsible for specialised commissioning, NHS England’s Medical Director, the Chief Executive of Macmillan Cancer Support and the Chair of the Accelerating Access Review will all address delegates on the future of NHS specialised services and specialised commissioning under NHS England.

    Professor David L. Hayes, Medical Director of the Minnesota-based Mayo Clinic Care Network, will also be speaking about how to deliver and support complex care closer to patients’ homes.

    The full programme is available here.

    Tickets are still available and can be booked through the SHCA’s website,

  • SHCA reaction to NHS England's specialised commissioning prioritisation response

    On Friday 26th June, NHS England published its response to the recent consultation on ‘investing in specialised services’. The consultation ran for three months, closing in April 2015, and sought views on a set of principles to guide prioritisation of investment in specialised services by NHS England.

    As part of Friday’s publication, a paper prepared by the University of Essex summarises the 278 consultation responses received by NHS England. The document conveys a clear consensus from respondents on a number of issues, most prominently the need for greater transparency on the part of NHS England’s specialised commissioning function and the requirement for a swifter policy development process.

    NHS England’s response to these substantive points is disappointingly brief, but further work on the processes used within specialised commissioning was promised for the summer. The SHCA’s consultation response and those of its members are cited within the report.

    Separately, a major point of concern for patient groups has been the longstanding absence of a mechanism for limited access to specialised treatments for patients in urgent need in cases where a national funding decision is yet to be taken by NHS England.

    On 11th June NHS England published a new standard operating procedure for funding requests for clinically critically urgent treatment outside established policy. While the publication of this mechanism is an important step, a number of concerns persist on its fitness for purpose. The SHCA has produced an initial analysis of the document here.

  • SHCA Conference on future of NHS specialised care - registration open

    The Specialised Healthcare Alliance is pleased to confirm its fourth major conference on the future of specialised services will be held on Tuesday 14th July 2015 in the Queen Elizabeth II Conference Centre in Westminster.

    Our last conference in 2013 focused on seizing the opportunities of NHS reform for specialised services. This year, at the outset of the new parliament, we invite everyone with an interest in care for people with rare and complex conditions, from patients to clinicians, commissioners and industry, to join us in helping to shape the agenda in specialised care in the next five years.

    We’re pleased to announce that Alastair McLellan, Editor of the Health Service Journal, will be chairing this year’s conference, with speakers including:

    • George Freeman, Minister for Life Sciences
    • Sir Bruce Keogh, NHS England Medical Director
    • David L Hayes, Medical Director, Mayo Clinic Care Network
    • Richard Jeavons, NHS England Director of Specialised Services
    • Anita Charlesworth, Health Foundation, Chief Economist
    • Lynda Thomas, Macmillan Cancer Support, Chief Executive.

    Further speakers are set to be confirmed in the coming days.

    Registration is open and tickets can be booked here.

  • Party leaders respond to SHCA

    Ahead of the 2015 General Election, the leaders of the Conservative and Labour parties responded to the open letter signed by 56 members of the Specialised Healthcare Alliance on the need for continued national commissioning of specialised services.

    Both David Cameron and Ed Miliband affirmed the importance of high quality specialised care and paid tribute to the Alliance’s work. Each leader also set out their party’s position on the issue raised by Alliance members.

    Their letters can be read here:

    David Cameron – Letter to SHCA April 2015
    Ed Miliband – Letter to SHCA May 2015

  • SHCA responds to NHS England consultation on specialised services prioritisation

    The Specialised Healthcare Alliance has responded to NHS England’s consultation on the principles underpinning prioritisation decisions within specialised commissioning.

    While welcoming the consultation in principle, the Alliance’s response criticises unacceptable delays in its launch and emphasises the urgent need to consult on a wider range of generic policies, including those relating to Individual Funding Requests and in-year service developments.

    Many of NHS England’s proposed principles remain ambiguous and the Alliance has called for greater clarity, as well as reforms to the process for developing policies to ensure that this is efficient, timely and robust.

    The Alliance’s response includes the SHCA’s own policy process proposal for NHS England’s consideration, and can be read in full here:

    SHCA response to NHS England prioritisation consultation – April 2015

  • Members call for national funding and standards for specialised services to be protected

    56 of the Alliance’s members have signed open letters calling on party leaders to maintain national funding and care standards for people with rare and complex conditions.

    Since April 2013, 147 such services have been funded by the NHS at national level, enabling consistent standards of access and care for patients across England. NHS England has, however, announced its intention to move to local place-based budgets for specialised services. This could precipitate the same variation in access experienced by women seeking IVF, with only one in five Clinical Commissioning Groups offering treatment in line with NICE guidelines.

    A copy of the letter to the Prime Minister is as follows:


    Dear Prime Minister,

    We write as charities in membership of the Specialised Healthcare Alliance, a broad coalition campaigning on behalf of patients with rare and complex conditions requiring specialist NHS care.

    The NHS budget for these services is over £14 billion. They include services for the most vulnerable patients with the rarest conditions, as well as those for more commonly known conditions, including brain and spinal injury, cancer, Cystic Fibrosis, HIV and Multiple Sclerosis.

    Each of the main political parties has supported national commissioning of these services since the last General Election. There are now concerns that otherwise desirable collaboration with local commissioners could in future jeopardise consistent national standards of care across the country.

    We therefore call on you to pledge that, should you form the next Government, you will maintain and protect national budget-holding and accountability for prescribed NHS specialised services.

    We are writing to each of the main parties in similar terms and look forward to your response.

    Yours sincerely,

    Paul Lenihan, Action Duchenne
    Alan Heywood-Jones, Alpha-1 Awareness UK
    Lynne Regent, Anaphylaxis Campaign
    Chris Phillips, Behçets International
    Caroline Davey, Bliss
    Paddy Tabor, British Kidney Patient Association
    Andrew Langford, British Liver Trust
    William Campbell, British Pain Society
    Patricia Osborne, Brittle Bone Society
    Ed Owen, CF Trust
    Alison Taylor, Child Liver Disease
    Carlee Gilbert, Child Lung Foundation
    Anne Keatley-Clarke, Children’s Heart Federation
    Rosanna Preston, Cleft Lip and Palate Association
    Laura Courtney, CLIC Sargent
    Catherine Harris, Communication Matters
    Sarah Vibert, Epilepsy Society
    Paul Decle, Forum Link
    Caroline Harding, Genetic Disorders UK and CGD Society
    Jayne Bressington, GIST Support UK
    James Babington Smith, Guillain-Barre and Associated Inflammatory Neuropathies
    Charles Gore, Hepatitis C Trust
    Kathy Oliver, International Brain Tumour Alliance
    John Reid, Limbless Association
    Sally Light, Motor Neurone Disease Association
    Nick Rijke, MS Society
    Nickie Roberts, Multiple System Atrophy Trust
    Eric Low, Myeloma UK
    Deborah Gold, National AIDS Trust
    Timothy Statham, National Kidney Federation
    Arlene Wilkie, Neurological Alliance
    Richard Rogerson, Niemann-Pick Disease Group
    Katharine Taylor, Ovarian Cancer Action
    Steve Ford, Parkinson’s UK
    Richard Surman, Pelvic Radiation Disease Association
    Tess Harris, PKD Charity
    Lesley Kavi, POTS UK
    Susan Walsh, Primary Immunodeficiency UK
    Andrew Wilson, Rarer Cancers Foundation
    Richard Piper, Roald Dahl’s Marvellous Children’s Charity
    Pat Roberts, Save Babies Through Screening Foundation UK
    Chloe Kastoryano, Scleroderma Society
    Amy Baker, Scleroderma Society UK
    David Scott-Ralphs, SeeAbility
    John James, Sickle Cell Society
    Paul Stemman, Sign Health
    Dan Burden, Spinal Injuries Association
    Siobhan Dunn, Teenage Cancer Trust
    Rosemary Gillespie, Terence Higgins Trust
    Dalton Leong, The Children’s Trust
    Jayne Spink, Tuberous Sclerosis Association
    Arlene Smyth, Turner Syndrome Support Society
    Matthew Buckland, UK Primary Immunodeficiency Network
    Chris Sotirelis, UK Thalassaemia Society
    Colin Dyer, WellChild
    John Cowman, Young Epilepsy

  • Improving NHS England's Policy Process

    The Specialised Healthcare Alliance was asked by NHS England to develop proposals for improvements to its policy development process for specialised services.

    The proposal sought to outline a process which would combine greater transparency and timeliness alongside robustness in the development of policy.

    Specialised Healthcare Alliance members fed into the proposals, which are now with NHS England for their consideration.

    They can be read in full here:

    SHCANHS England Policy Development Process Proposal

  • Lords debate on rare diseases - SHCA briefing

    On Tuesday 3rd March, Lord Turnberg led a short debate in the House of Lords on access to treatment for people with rare diseases.

    The debate covered a number of important issues, including the desire for greater clarity on NHS England’s internal structures and processes.

    The lack of patient access to new treatments pending the outcome of NHS England’s ongoing consultation on principles for investing in specialised services was also raised, without assurances from the Minister on the issue.

    The Specialised Healthcare Alliance provided briefing to Peers ahead of the debate and drew particular attention to the patients left in limbo by the ongoing consultation without recourse to interim funding.

    You can read the Alliance’s debate briefing here: SHCA Briefing – Lords Debate on Rare Disease Treatment Access

  • SHCA response to parliamentary debate on NHS specialised commissioning

    Yesterday MPs debated the future of NHS specialised commissioning and raised a number of concerns on behalf of patient groups, particularly in relation to NHS England’s plans to ‘co-commission’ specialised services with local Clinical Commissioning Groups.

    Both the Minister and Shadow Minister endorsed the principles underpinning national commissioning of these services, but a number of questions remain unanswered on the detail of NHS England’s plans.

    The Specialised Healthcare Alliance’s response to the debate can be found here.

    SHCA Response to Westminster Hall debate – Press Release – Jan 2015

  • Parliamentary debate on specialised commissioning - SHCA briefing

    The Specialised Healthcare Alliance has produced a briefing for parliamentarians wishing to participate in this afternoon’s debate on national commissioning of NHS specialised services in Westminster Hall.

    The debate is being led by Stephen Gilbert MP and the Alliance is calling for a focus on NHS England’s proposals to ‘co-commission’ specialised services with local Clinical Commissioning Groups.

    National specifications are now in force for all specialised services and the SHCA is calling for Ministers to commit to the retention of national budget-holding for next year and future years.

    Our briefing can be found below.

    SHCA Briefing – Westminster Hall debate on specialised commissioning – January 2015

  • SHCA - the evidence on co-commissioning specialised services

    NHS England is taking forward plans to ‘co-commission’ the vast majority of specialised services with local Clinical Commissioning Groups.

    To date, ‘co-commissioning’ has not been fully defined by NHS England. The Specialised Healthcare Alliance has reviewed the materials published on the subject to date and prepared a primer which pulls this together.

    Worryingly, this suggests that co-commissioning will go significantly beyond greater collaboration between national and local commissioners – a longstanding priority for the Alliance – and is instead intended to see ‘place-based’ budgets for specialised services across the country.

    Alliance members fear that such changes to budgetholding would risk bringing about a return to the ‘postcode lottery’ of standards and access to specialised services previously seen before such services were commissioned nationally.

    Accordingly, the SHCA is calling upon NHS England and Ministers to provide firm assurances that the budget for specialised services will continue to be held at national level, next year and in future.

    The primer on co-commissioning can be accessed here.

    SHCA – Co-Commissioning Primer – January 2015