UK Rare Disease Patients Need Integrated Care from Specialists and Local Teams

Earlier this month, senior NHS official Dr Martin McShane raised the pressing issue of how to improve and sustain primary care for the growing number of people with one or more complex, long-term health conditions in the UK. With an aging population in mind, McShane suggested that, with additional training, some GPs and their practices could specialize in “complex care.” He believes these new practices could help bridge gaps between specialized, hospital-based services and ongoing healthcare closer to home– for those with long-term health conditions such as diabetes and dementia.

These proposals have implications for the 3.5 million people in the UK living with rare diseases. Any substantial investment and remodelling of care for those with long-term conditions must consider the needs of this patient group. McShane’s suggestion for specialized practices may be a solution for those with conditions such as heart disease or Alzheimer’s, but is likely to present challenges when applied to patients with rare, complex conditions.

The lack of a sustainable and effective approach to treating those with complex needs in the community, is an issue that is familiar to many of the 60,000 people in England with muscular dystrophy and other rare neuromuscular conditions. The Muscular Dystrophy Campaign regularly hears from people who fall foul of the gap between the highly specialized, expert, hospital-based teams they may see just a few times a year, and the day-to-day general care they receive from local GPs, nurses and physiotherapists.

In some areas, excellent muscle clinics and other regional centers of expertise have been developed. Centers, such as those located at trusts in Newcastle, Leeds, Liverpool, Oxford and London, provide a regional hub for patients with neuromuscular conditions and support primary care professionals working with them. However, their geographical spread is uneven and there are too few key staff, such as neuromuscular care advisers and specialist nurses, in posts linking specialized and community services.

As with so many areas within the NHS, we need to see investment in these specialized centers to provide community-based health professionals with support through expertise and advice. However, in this case, there is certainly a strong financial argument for rebalancing existing funding to improve services.

Severe respiratory infections, falls, and cardiac problems all accompany forms of muscular dystrophy. Sadly, frequent and traumatic health emergencies are a fact of life for many families living with these conditions. Health professionals based locally, with full knowledge of medical history, a thorough understanding of a particular condition, and a direct line to regional specialists, can both prevent crises and be available to advise emergency teams should one occur.

NHS data indicates that around 40 percent of emergency admissions to hospital for this patient group could have been avoided through preventative care– monitoring, early intervention and physiotherapy. This amounts to potential savings of up to £32m a year on emergency care. It seems unlikely that ‘complex care’ practices have a part to play here. It is not workable or beneficial to have a scenario where a severely disabled patient is forced to travel long distances to see a GP who, while specialising in complex care, is still unlikely to come in contact with a substantial number of patients with the same rare condition.

Some regions have benefited from investment in specialist centers and teams to improve ongoing care for those with neuromuscular conditions. Following the critical Walton Report in 2009, the number of specialist neuromuscular care advisers and nurses in the UK is increasing. Many work both directly with patients in the community by linking in with GP practices and clinics, and with neuromuscular consultants, specialist physiotherapists, and respiratory teams through expert specialist centers. They are well placed to share expertise on how specific conditions progress, and help evolve knowledge of effective treatments with GPs and other health professionals delivering primary care.

Robert Meadowcroft is chief executive of the Muscular Dystrophy Campaign.

 Read more at The Guardian.