News item

Archive of: 2014

  • Alliance responds to tariff proposals for 2015/16

    The SHCA is alarmed by NHS England and Monitor’s current proposals to introduce marginal pricing of 50% for specialised services above historic baseline levels. In particular, we are concerned that this will effectively ration access to treatment, especially for the most complex and prospectively expensive patients. This effect seems likely to be exacerbated by the matching payment for activity below historic levels. Paying trusts for doing nothing also contradicts the 5 Year Forward View’s commitment to concentrate patient volumes at specialised providers with the best outcomes.

    The Alliance has requested a copy of NHS England’s impact assessment as part of its response, which can be read in full here: SHCA Response to Tariff Consultation – Dec 2014

  • Fixing or ditching specialised commissioning - SHCA presentation at Britain Against Cancer

    ‘Is NHS England seeking to fix or ditch specialised commissioning?’

    The Director of the Specialised Healthcare Alliance today spoke at the Britain Against Cancer conference on the above question in relation to NHS England’s proposals to co-commission specialised services with Clinical Commissioning Groups.

    The slides used during the presentation can be found here: SHCA – Is NHS England seeking to fix or ditch specialised commissioning?

    For further updates on this issue, follow the SHCA on Twitter @theSHCA.

  • Report of SHCA Holyrood Reception

    On 12th November 2014, the Specialised Healthcare Alliance held a reception in the Scottish Parliament to discuss services for people with rare and complex conditions across Scotland.

    The event was kindly sponsored by Annabel Goldie MSP and featured speeches by the Cabinet Secretary for Health and Wellbeing, Alex Neil MSP, as well as Deirdre Evans from the Scottish National Services Division and Patricia Osborne, Chief Executive of the Brittle Bone Society.

    The report of the event, along with the findings of a pre-event mini survey, can be found here:

    SHCA Holyrood Event Report – 20141112

  • SHCA letter to The Times

    The Chair and members of the Specialised Healthcare Alliance wrote to The Times newspaper last Thursday 6th November to express their serious concern on proposed changes in specialised commissioning.

    The letter and list of signatories is enclosed below.


    The Health and Social Care Act 2012 has been much criticised. The decision to transfer responsibility for specialised services from local commissioners to NHS England was, however, recognised by all as a sensible step, providing certainty around standards and access to treatment where previously there had been little or none.

    NHS England’s subsequent experience has been less happy, involving a substantial overspend and cumbersome decision-making, all with damaging effects for patients.

    These problems are, however, fixable and do not challenge the fundamental sense of planning specialised services and sharing the associated financial risk across the country.

    It is therefore of serious concern that NHS England is now proposing to co-commission specialised services with local clinical commissioning groups (CCGs).

    It makes sense for the NHS to collaborate at national and local level, but muddying budgets and responsibility between NHS England and CCGs promises a return to the postcode lottery of the past.

    We write as members of the Specialised Healthcare Alliance.

    Baroness Wheeler of Blackfriars (Chair)
    Anne Keatley-Clarke, Children’s Heart Federation
    Arlene Wilkie, Neurological Alliance
    Caroline Davey, Bliss
    Catherine Harris, Communication Matters
    Chloe Hayward, UK Acquired Brain Injury Forum
    Chris Phillips, Behçet’s Syndrome Society
    Christos Sotirelis, UK Thalassaemia Society
    Colin Dyer, WellChild
    Dan Burden, Spinal Injuries Association
    David Edgar, UK Primary Immunodeficiency Network
    David Ryner, CML Support Group
    Deborah Gold, National AIDS Trust
    Ed Owen, Cystic Fibrosis Trust
    Elizabeth Bevins, Raynaud’s & Scleroderma Association
    Henny Braund, Anthony Nolan
    Jackie Bland, Shine
    James Babington Smith, Guillain Barré and Associated Inflammatory Neuropathies
    Jayne Spink, Tuberous Sclerosis Association
    Jeremy Taylor, National Voices
    John Kell, Motor Neurone Disease Association
    Lara Bloom, Ehlers-Danlos Support UK
    Lesley Kavi, Postural Tachycardia Syndrome UK
    Liz Carroll, Haemophilia Society
    Lynne Regent, Anaphylaxis Campaign
    Nick Sireau, AKU Society
    Paddy Tabor, British Kidney Patient Association
    Paul Decle, Forum Link
    Paul Lenihan, Action Duchenne
    Richard Piper, Roald Dahl’s Marvellous Children’s Charity
    Richard Rogerson, Niemann-Pick UK
    Rosanna Preston, Cleft Lip & Palate Association
    Rosemary Gillespie, Terrence Higgins Trust
    Sasha Daly, Teenage Cancer Trust
    Steve Powell, SignHealth
    Susan Walsh, Primary Immunodeficiency UK
    Timothy Statham, National Kidney Federation

  • SHCA survey backs NHS England commissioning of specialised services

    The Specialised Healthcare Alliance has today published the results of a survey on significant changes under consideration by NHS England for specialised commissioning.

    Over the summer, patient-related organisations, Chairs of NHS England’s Clinical Reference Groups and companies were asked for their views on the scope of specialised commissioning and the potential for Clinical Commissioning Groups to co-commission specialised services in future.

    The key findings of the survey were as follows:

    • 90% of respondents preferred their service to remain part of specialised commissioning – none favoured leaving specialised commissioning.
    • 82% of respondents favoured either no change to commissioning responsibilities for their service or for more of their service to be incorporated within specialised commissioning. 9% opted for more commissioning responsibilities to fall to CCGs.
    • On the subject of co-commissioning, while respondents were open to collaboration between NHS England and local commissioners, only 15% of respondents would be happy to see this include pooling of budgets.
    • 20% of respondents were optimistic that improvements would be made to their service in the coming year, while 40% were pessimistic.
    • The shape of the response was broadly replicated in relation to those services flagged up by NHS England as more immediate candidates for devolution to CCGs, such as chemotherapy, HIV, neurosciences, radiotherapy and renal dialysis.

    These results have been shared with NHS England to help inform the ongoing work of the taskforce.

    The full survey report is available here: SHCA Survey Results 2014

  • SHCA discusses specialised commissioning with NHS England leadership

    On 23rd September, members of the Specialised Healthcare Alliance met the Chief Executive of NHS England, Simon Stevens, the Medical Director, Sir Bruce Keogh and Dr Paul Watson, Chair of the Specialised Commissioning Oversight Group, to discuss changes in specialised commissioning.

    Discussion covered NHS England’s future intentions in relation to the scope and commissioning arrangements for specialised services, as well as the perspectives of the patient organisations in attendance, Anthony Nolan, the Cystic Fibrosis Trust and the Neurological Alliance. The Alliance emphasised the advantages of nationally-led specialised commissioning and the need to avoid confusing budget-holding and responsibility through otherwise desirable collaboration with CCGs.

    Attendees were pleased to note the priority being attached to specialised commissioning and expressed their desire to work constructively with NHS England on any changes in future. In that regard, Simon Stevens reassured the Alliance that a measured approach would be adopted, with more significant changes likely to be deferred until 2016/17.

  • SHCA submission to NHS England specialised taskforce

    The Specialised Healthcare Alliance has submitted a response to NHS England’s specialised services taskforce, which has been established to review the structures and processes of specialised commissioning with a view to exerting greater financial control.

    The Alliance’s response covers a wide range of issues, including the prospect of co-commissioning for specialised services and consideration of the scope of specialised commissioning.

    The SHCA’s submission can be read in full here.

  • SHCA welcomes publication of Scottish rare disease plan

    In response to the UK Strategy for Rare Diseases, the Scottish Government has published Scotland’s national implementation plan, which sets out how the overarching Strategy commitments will be taken forward for the benefit of Scottish patients.

    The Alliance and its members have engaged closely with the development of the Scottish plan and will continue to take a keen interest in its implementation in the years to come.

    The document can be accessed here:

  • Speech on prospects for specialised services

    The Director of the Specialised Healthcare Alliance, John Murray, today addressed the Health + Care conference in the ExCel Centre in London.

    His speech on the prospects for specialised services is available to view here.

    SHCA – Prospects for Specialised Services Speech – June 2014

  • SHCA launches Manifesto for specialised services

    The Specialised Healthcare Alliance has launched its Manifesto for specialised services at a Parliamentary Reception attended by a wide range of patients and clinicians.

    Ahead of the 2015 General Election, the Alliance’s Manifesto calls for all political parties to commit to stability in the structures of specialised commissioning in order to allow the potential of the current arrangements to be maximised.

    The Manifesto also calls on NHS England to strengthen its commissioning structures by creating a single directorate for specialised services, as well as to work towards better integration of specialised and non-specialised care.

    The Alliance’s Chair, Baroness Wheeler, addressed the Parliamentary Reception, along with Andrew Gwynne MP for the Shadow Health Team and Earl Howe, the Minister with responsibility for specialised services.

    The Manifesto is now available to view. Further information on the reception will be available shortly.

    SHCA – 2015 Manifesto

  • SHCA announces major parliamentary event on specialised services

    On 17th June, the Specialised Healthcare Alliance will be holding an event in Parliament to raise awareness of services for people with rare and complex conditions amongst parliamentarians and senior health leaders.

    The event will consist of an expert lobby, bringing together a wide range of clinicians and patients to share their experience of specialised care with their MPs, followed by a parliamentary reception. The lobby is intended to demonstrate the scope and importance of specialised services, which collectively account for nearly £14billion of NHS spending. The individual testimonies of patients and clinicians are intended to bring these services to life.

    The parliamentary reception will be an opportunity for the Alliance’s members, along with senior leaders from a range of health organisations, to join clinicians and patients in launching the SHCA’s Manifesto for specialised services.

  • NHS England establishes specialised services taskforce

    At the initiative of its new Chief Executive, Simon Stevens, on 1st May NHS England launched a three month taskforce to conduct a comprehensive review of its specialised commissioning structures and processes. This will be led by Paul Watson, Chair of the Specialised Services Oversight Group, bolstered by an additional 50 staff members to work on the project from elsewhere in NHS England.

    While the taskforce and its seven workstreams represents a good opportunity to set specialised commissioning on a stronger footing for the future in order to maximise the benefits of NHS England’s role as single national commissioner, the announcement poses questions over how services will be developed during the review period and on the future direction for specialised care.

    The Alliance has prepared a briefing on the taskforce and will be making a formal submission in due course.

    SHCA – Specialised Taskforce Briefing – May 2014

  • SHCA publishes RAG-rating of NHS England’s operating model for specialised services

    One year from the formal establishment of NHS England, the Specialised Healthcare Alliance has reviewed the extent to which the original intentions for specialised commissioning have been met.

    The Alliance’s analysis shows that NHS England still has a considerable way to go to make its plans for an efficient specialised commissioning function into a reality. Most of the provisions of the single operating model for specialised services have been RAG-rated as amber or red by the Alliance, with only three rated as green.

    The new arrangements for specialised commissioning continue to present an excellent opportunity to drive up standards of care for patients across the whole of England. However, one year on, there remains much work to do and an urgent need for clearer leadership in specialised commissioning.

    The Alliance’s analysis is available here: SHCA One Year Review of Specialised Services Operating Model – March 2014

    NHS England’s operating model for specialised commissioning is available here:

  • SHCA Summary of German Rare Disease Plan

    The Specialised Healthcare Alliance has produced a short summary of Germany’s National Action Plan for People with Rare Diseases.

    The Action Plan was developed by a cross-Ministry committee, which will now oversee its implementation. Of particular interest are the Plan’s recommendations on designating expert centres within a three-tier system. Each recommendation is also accompanied by clear actions for named organisations.

    The German plan can be read in full here.

    The SHCA is pleased to be part of the UK Rare Disease Forum and looks forward to working with the four nations of the UK on the implementation of the UK Strategy for Rare Diseases.

    SHCA Summary of German Rare Disease Plan – 201403

  • SHCA grows to 100 patient-related members

    The Specialised Healthcare Alliance is delighted to welcome its 100th patient-related member, WellChild.

    WellChild joins the Alliance at an exciting time as we continue to seek improvements in specialised services and to raise awareness of these services with parliamentarians ahead of the 2015 General Election.

    With our growing membership now covering an ever broader range of specialised services, the Alliance looks forward to consolidating its presence in the ongoing campaign for people with rare and complex conditions.