Joint statement from The Ehlers-Danlos Support UK, Hypermobility Syndromes Association and The Marfan Trust regarding UCLH hypermobility service

We understand that the recent announcement about NHS services at UCHL is raising more questions than answers, and is generating great concern within our community.  We want you to know that we share these concerns, and are working very hard behind the scenes in partnership with other charities to get the answers you need and deserve. As soon as we have those answers, we will let you all know - TeamHMSA

The Ehlers-Danlos Support UK, Hypermobility Syndromes Association and The Marfan Trust are concerned by the decision of University College London Hospitals NHS Foundation Trust (UCLH) to temporarily close its hypermobility service to all new referrals.

We recognise the pressures facing the service and its clinical teams, and we understand that patients have experienced unacceptable waits for assessment. However, our discussions with UCLH have also highlighted operational challenges affecting the service. We are concerned that immediate operational problems and the separate question of the future commissioning and configuration of the service should not become conflated. Both need to be addressed, but they require different solutions.

Our concern extends beyond access to hypermobility care. People referred to services such as UCLH may have a range of heritable connective tissue disorders, including Ehlers-Danlos syndromes, Marfan syndrome and Loeys-Dietz syndrome, as well as hypermobility spectrum disorders and other less common connective tissue conditions. These can involve complex, multisystem presentations and usually requires specialist assessment, diagnosis, surveillance and coordinated management often through a multidisciplinary team (MDT), going considerably beyond routine musculoskeletal care.

The UCLH letter proposes that people should predominantly be directed towards local community musculoskeletal services during the closure, and that GPs should refer to Northwick Park where EDS is suspected. Given the above need for specialist management and the fact the highly specialised National EDS Service at Northwick Park does not accept GP referrals unless there is a known diagnosis of rare monogenic EDS; we do not believe these routes can simply be assumed to replace the expertise or remit of the existing service. There needs to be much greater clarity about the pathway for the long-term management of people with suspected or confirmed heritable connective tissue disorders.

We are also concerned that Marfan syndrome, Loeys-Dietz syndromes and other heritable connective tissue disorders are not addressed. Any review of the future service needs to consider the full range of people currently dependent upon, or potentially requiring, specialist connective tissue disorder expertise, not only those referred specifically for the management of symptomatic joint hypermobility.

UCLH has told us that an options appraisal will now take place and that patient groups will be involved. We welcome that commitment and want to work constructively with UCLH, the relevant commissioners and clinical teams to develop a safe and sustainable solution.

Together, we are seeking clarity on:

• the clinical pathways that will be available to people who would previously have been referred to UCLH, including those with confirmed pathogenic genetic variants, vascular connective tissue disorders and other rare heritable connective tissue disorders with potentially serious or life-limiting complications. We need to understand where these patients will now be referred and how their specialist management and surveillance will be provided;

• how operational problems affecting the existing service will be addressed separately from decisions about its long-term future;

• whether community MSK services have the expertise, capacity and remit to assess and manage people with symptomatic joint hypermobility and heritable connective tissue disorders;

• how people requiring specialist management, including those in within Marfan syndrome, Loeys-Dietz syndromes, Ehlers-Danlos syndromes or other heritable connective tissue disorders, will access appropriate expertise;

• what will happen to people already on the UCLH waiting list;

• what pathways will be available to people outside North Central London; and

• how people affected by these conditions, patient organisations and clinicians will be meaningfully involved in the options appraisal and decisions about the future service.

  
  

This is not simply an issue affecting one clinic. It reflects a wider lack of clear and equitable pathways for people with heritable connective tissue disorders and hypermobility-related conditions. Too often, people and their clinicians struggle to identify where appropriate expertise sits within the NHS and where responsibility lies for diagnosis, management and ongoing care.

Our three organisations are already working with clinicians, NHS services and relevant professional bodies including the British Society for Rheumatology, to better understand the barriers that exist and what is needed to improve access to appropriate care. We want to bring that experience to the UCLH review and work with those responsible for commissioning the service to help develop a pathway that is clinically appropriate, sustainable and responsive to the needs of the communities it serves.

We are concerned about the current situation, but we are committed to working constructively towards a solution.

The Ehlers-Danlos Support UK

Hypermobility Syndromes Association

The Marfan Trust