SHCA Meeting London - 15th April

The Specialised Healthcare Alliance held their quarterly meeting 15th April in the new conference suite at Jones Day thanks to Brittle Bone Society’s Trustee and Secretary Mr John Philips’ Learn more about Jones Day here

The SHCA had required a suitable central London venue and members were asked if they could assist. Happily the BBS were able to step in thanks to John Phillips and to Jones Day.

Being able to use the fantastic new conference centre, was very well received by all members in attendance and the SHCA secretariat including Mr John Murray and Andrew Wilkinson extended their fulsome thanks to the BBS and in particular to John Phillips and Jones Day for this extremely kind and generous gesture.

CEO Patricia Osborne attended the SHCA meeting which involves a coalition of patient-related groups and corporate members with a strong record of campaigning on behalf of people with rare and complex conditions in need of specialised care.You can find out more about other members on the SHCA website here. The SHCA group patient-related membership is now up to 112.



Matters discussed included: Policy updates on NHS England appointments re specialised commissioning. Also discussed was NHS England consultations with updates on prioritisation consultations.



The members discussed the Scope of specialised commissioning (morbid obesity services). NHS England finances and uncertainty on budgets. Reduced defecits were also discussed.



You can find out about DEVO MANC here or elsewhere on the web 

Devolution of health and care budgets in Greater Manchester, with particular reference to highly specialised services.  The matter of opting out of national standards for services was debated at our SHCA meeting.


Prioritisation consultation. Delays were raised. Draft plans seemed complicated.

More information available here.  

Clinical Commissioning Groups’

CRG’s reforms to expand membership were resulting in members concerns about manageability.

NHS England policy backlogs, interim treatment access – re signing off national policies. Collaborative commissioning and the  changes needed would need legislative change.

The SHCA sent letters to David Cameron and to Ed Milliband – signed off by many members including the Brittle Bone Society. Read the letter and response here.

SHCA are planning a conference and will begin planning on this soon after the GE. The BBS shall ensure they send a representative to this event.

The Alliance announced they would be developing a major report this year as part of its work programme. The intention was to gather and articulate a consensus view for the specialised community on what action would be required over the course of the next parliament.

The report would aim to draw together a range of stakeholders, from patients, their representatives, providers, Royal Colleges, industry and elsewhere, to develop a vision for the future of specialised services and clear recommendations for realising this. The aim would be to publish the report between October and November 2015.

For some explanatory notes click here.

National tariff charges for specialised services was discussed. BBS and all members were encouraged to share their experiences of charges with the SHCA so they might continue to communicate concerns on the matter. This will help the SHCA with contributions to the UK Rare Disease Forum and Scottish Rare Disease Implementation Oversight Group.

Dr Jem Rashbass, Director for National Disease Registration at Public Health England and former Director for Cancer Registry Modernisation was the Alliance’s lunch guest.