'One Stop Shop' services needed for care and treatment of rare diseases

A consultation on the treatment of rare diseases, published by the Department of Health, has found that the care sector needs to achieve more co-ordinated services in order to be more flexible for service users with less typical conditions.

Although recognising that the UK has a strong record on rare diseases, compared to other countries, the consultation has recommended that specialist centres be set up to achieve a more precise diagnosis and that the care sector should look to achieve a ‘one stop shop’ scenario in order to avoid situations where patients are expected to visit multiple clinics.

Responding to the consultation, Alastair Kent OBE, chair of Rare Disease UK, the national alliance for people with rare diseases and all who support them, said:

‘Patients affected by rare diseases have often had to struggle to get effective help from the NHS. Difficulties, delays and mistakes in diagnosis have limited access to good quality care, treatment and support , and have restricted opportunities for research.

‘The publication of the consultation on a national plan for rare diseases creates a golden opportunity for the NHS in all four nations of the UK to work together to create a strategic, sustainable response to the needs of the millions of people affected by rare diseases in Britain today. It also provides a basis for improving R&D and supporting the creation of innovative therapies. Rare Disease UK welcomes this consultation and would urge all those with an interest in the health and well-being of patients and families with rare diseases to respond and let their Government know their views.’

Director of the Specialised Healthcare Alliance, John Murray, has announced there will follow a close consideration of the consultation’s content, ‘The Specialised Healthcare Alliance welcomes this consultation on a rare diseases plan for the UK but rare diseases do not sit in isolation, so we will be looking carefully at how the plan sits in the broader provision of integrated specialised services in considering our response’.

Rare diseases are judged by the Department of Health to be those that affect fewer than 5 people in 10,000, although over the course of a lifetime statistics show that 1 in 17 people will experience one of the diseases falling into this category.

The consultation was undertaken in response to a European Council initiative that called for every member state of the EU to have its own strategy on treating rare diseases, while the Council also pursues rare disease research through financing the work of the International Rare Disease Research Consortium (IRDiRC).

Image: from the Council of the European Union