Over the past month, Ciarán has travelled to London and Leicester to attend meetings held by the Specialised Healthcare Alliance (SHCA). In today’s blog, he explains why he attends these meetings and why the work of the SHCA is so important.The 

SHCA is an important collation of 120 patient groups and 16 relevant corporate members who campaign on specialised health care matters on behalf of all patients with complex and rare diseases.

The Alliance actively campaigns to policy makers and the NHS on behalf of those whose treatment or condition is either expensive to treat, complex or requires specialist care. The nature of these conditions means that, in the majority of cases, there is a small number of patients scattered throughout the UK, who cannot access adequate care due to the cost of their treatment, or who access an existing treatment that is under threat due to NHS budget reforms.

As the NHS is constantly under pressure to decrease expenditure, specialised services are normally the first to suffer. The SHCA has an important role to play, lobbying on behalf of these patient groups and creating a strong, unified patient voice.The SHCA and its members are most concerned about the way specialised services are commissioned with decisions being made in favour of conditions that have a large patient group and large public profile. Combined, patients with rare and complex conditions represent a huge proportion of the population in this country. So large that almost £12 billion is spent on specialised services, 10% of NHS England’s national budget.The AKU Society recognises the importance of having a strong voice. Having this powerful alliance behind us, as we campaign for the rights of AKU patients, allows us to not only effectively campaign but also pre-warns us of any threats to the vitally important work that we do.The first meeting I attended was the SHCA’s quarterly meeting in London. These meetings allow the Alliances’ members to be kept in the loop on their work and update those attending on the latest developments in healthcare policy.

In the meeting, we learnt about the Alliances approach post- Brexit, about the effect of the challenging financial environment and the effect on the NHS specialised commissioning budget. We also found out about the recent report released by the National Audit Office (NAO) on the commissioning of specialised services since April 2013.

In the report, the NAO declined to assure the value provided by NHS England’s specialised commissioning functions. They criticised the management of contracts through collaborative commissioning and stated that NHS England lacks the staff and expertise required to do this effectively.

They also highlighted that NHS England lacks the information and data to drive and implement the necessary improvements in specialised services and to ascertain if patient inequalities are being changed. The report went on to criticise the poor financial control over baseline budget and new medicines.

The SHCA worked closely with the NAO, supplying them with case studies from its members and its own expertise. They also stressed to the NAO, who agreed with them, that NHS England’s current governance does not allow for much transparency.

I also attended a regional hub meeting in Leicester. This meeting was set up by the SHCA for members in the East of England to increase their understanding of how specialised commissioning works in practice. Along with other members of the SHCA, we heard from the assistant directors of specialised commissioning for the East of England and the East Midlands. They gave an in-depth description of the work they do, along with an explanation of the areas in which they were currently struggling. Although not relevant directly to the AKU Society, due to our emphasis on national commissioning, it was incredibly informative and allowed us to hear the concerns of those who are working directly with NHS England.The SHCA provides a vital platform to campaign for improvements to specialist healthcare services. The AKU Society will continue to attend meetings, champion the rare disease community and fight for much-needed change to ensure the patients’ voice is heard. If you would like more information about the meetings or want to get involved and share your views, email