Last week, Cambridge Rare Disease Network (CRDN) organised an event designed to encourage discussion about the potential need for a rare disease home nursing service. This week’s blog talks about the important messages taken from the event.

There are over 7,000 recognised rare diseases affecting 350 million people worldwide. These 7,000 rare diseases have a wide range of symptoms and as such, it is impossible for health-care professionals to be experts in them all. The lack of awareness and understanding of rare conditions means that many patients suffer from misdiagnosis, poor coordination of care and lack of information. To overcome these obstacles and improve care, a rare disease specialist home nursing service has been put forward by Cambridge Rare Disease Network.

Nurse Specialists provide expert advice related to specific conditions, providing specialist advice and psychological support for both the patient and family.  In a 2009 study carried out by the RCN/National Voices, patients consistently rated their Nurse Specialist as higher than other health professionals in terms of both their honesty and of understanding their needs.

Hiran Pras from Cambridge Consulting Network was the first speaker, who spoke about the findings from a recent project assessing the need for a rare disease home nursing service. Feedback from the rare disease patient survey found that while 85% of patients did not have a home-visiting nurse service, 54% believed such a service to be beneficial. Patients commonly reported that current nursing teams had no real knowledge into their disease and as a result, conditions were not being managed effectively. A specialist home nurse would be able to offer more personalised care, document disease progression and, crucially, understand the patient, their symptoms and their needs. The project also highlighted the need for non-clinical services, such as counselling, diet help and physiotherapy.

Hiran went on to consider the cost of such a project. Based on current nursing services, it was suggested that a 5 year pilot service would cost £454,250 per nurse. Hiran justified these high costs, by proposing that such a service would significantly reduce misdiagnosis rates that are far too common in rare disease patients. He also noted how Muscular Dystrophy care advisors, sickle cells and thalassaemia nurses and specialist Parkinson’s nurses have already been found to save significant time and money. Additionally he highlighted the huge cost of wasted medication and how more personalised care could help combat this issue.

We also heard from Larissa Kerecuk, who spoke about the new Rare Disease Centre at the Birmingham Children’s Hospital – the first of its kind in the UK. The centre will provide families living with rare or undiagnosed conditions with a personalised centre for diagnosis, assessment, treatment, information, research and peer-to-peer support. With the help of Roald Dahl’s Marvellous Children’s Charity, the hospital has just set up two new nurse posts, one for rare disease patients and one for undiagnosed patients.

The final speaker was Helena Baker, who spoke about the services offered at the Medical Research Network, which provide home nursing care during clinical trials and collect a lot of patient data from the home. Helena was keen to stress how valuable this home care has been, helping to reduce stress and increasing the likelihood of patients staying on the trial.

It is clear that current care services for rare disease patients are inadequate, with lack of information, delayed diagnosis and poor coordination of care among just some of the common problems. As a result, conditions are not being managed effectively and it is the patient who suffers. The need for more personalised care is vital and speakers at CRDN presented a lot of promising evidence for a rare disease home nursing service. By investing in such a programme, we can ensure that rare disease patients receive better, more personalised care.