In mid-April, Eve attended the Specialised Healthcare Commissioning Alliance (SHCA) meeting in London. The alliance, formed of patient-related groups and corporate members, meet quarterly to campaign on behalf of people with rare and complex conditions in need of specialised care. Eve tells us about the meeting.

Access to Treatment
As a rare disease charity, we are very aware of the difficulties patients can go through when accessing funding for medication. Welsh and Northern Irish AKU patients are currently unable to access the drug nitisinone at the National Alkaptonuria Centre (NAC) in Liverpool, while English and Scottish patients do have access to this medication.

Changes to the funding system have resulted in unacceptable delays in funding decisions, and this has impacted on a large number of rare disease patients. The SHCA meetings have been instrumental in allowing patient groups to join together and put pressure on the NHS to rectify the problems with the current specialised service commissioning system. The aim is to prioritise patients, putting them at the forefront of how they work.

Prioritising Specialised Treatments
The first topic of the meeting was the 3 month consultation period launched by the NHS in January. This was intended to look at prioritisation of specialised treatments and services. The alliance’s response to the consultation acknowledged the unacceptable delay in launching this consultation, and the major backlog resulting in delays to thousands of patients funding decisions.

A further concern discussed by the alliance was the absence of an interim funding mechanism whilst patients wait for a funding decision. This is extremely important for patients requiring treatment not yet covered by the national commissioning policy.

There are major concerns over how long it takes to develop national policies, and how this will further delay funding decisions for many patients in desperate need. The alliance has written to the medical director of the NHS and has asked for an urgent response on this matter.

Collaborative Commissioning
Another discussion topic was collaborative commissioning, referring to the move from a national budget towards a shared budget with clinical commissioning groups (CCGs). There were concerns among the alliance that full collaboration with CCGs would allow them to deviate from the national standards for specialised care. This has the potential to result in a postcode lottery system. The NHS have responded by confirming retention of national service specifications and clinical policies, however no commitments were made beyond 2015/16.

A National Disease Registry
Our lunch guest was Jem Rashbass, director of rare disease registration at Public Health England. Jem will be involved in developing a national rare disease registry for England, with the aim of collecting information on every patient who fits the diagnostic criteria.

The registry will be used for a number of applications including supporting patient care and outcomes, commissioning and research. Jem made it very clear that the registry will not be available for profit, but instead will improve the amount of information available about rare diseases in England.

It is clear that there are many flaws to the current specialised commissioning process. The SHCA meeting allowed for us to discuss some of these issues and put pressure on the NHS to address them. With an election approaching, it has never been more important to lobby MPs to put specialised services at the top of the agenda.