NHS England unveils rare diseases strategy

NHS England has published its plans for implementing the UK Strategy for Rare Diseases.

The Statement of Intent is a key document which will be used to inform the development of NHS England’s five-year strategy for specialised services.

The UK Strategy for Rare Diseases was published by the Department of Health in November last year, and Wales, Scotland and Northern Ireland are all expected to publish their plans ahead of Rare Diseases Day tomorrow, 28 February.

Speaking ahead of a Parliamentary reception, hosted by Rare Disease UK, James Palmer, Clinical Director, Specialised Services, said that NHS England was committed to improving services for patients with rare diseases, and to improving their outcomes, regardless of where they live.

He said: “As the sole commissioner of the vast majority of services involved in the treatment of rare disease, NHS England is in an excellent position to ensure that these services are of high quality, and are delivered in an equitable way across England.

“We are currently in the middle of developing our five-year strategy for specialised services and our planning for rare disease will be an integral part of that strategy.

“We will be working with key partners, such as Rare Disease UK, with patients, and patient groups, as well as wider stakeholders, in achieving a plan which is primarily focused on improving outcomes for patients, but which will also make the most of developing technologies and treatments in these service areas”.

NHS England has worked closely with Rare Disease UK in the development of its statement of intent.

Alastair Kent OBE, of Rare Disease UK, said: “Rare Disease UK is delighted to have forged close links with NHS England in developing this statement of intent, published today. This is a welcome step forward in the development of high quality services and support for patients and families with rare diseases.

“We look forward to continued collaboration as we translate this statement of intent into concrete plans for the delivery of services and support to rare disease patients throughout England”.

The UK Strategy for Rare Diseases contained a total of 51 commitments which all four countries have agreed to achieve by 2020.

The new strategy has been put together in response to a European call for a rare disease strategies in each EU member state, to build understanding of rare diseases and boost research.

Key elements of the strategy include:

• Personal care plans for patients, bringing together health and care services, with more support for patients and their families;

• Support for specialist clinical centres offering better care and support;

• Better education and training for health professionals to help ensure earlier diagnosis and access to treatment;

• Promotion of the UK as a world leader in research and development in this field.

Rare Disease UK has been holding receptions in England, Scotland and Wales to mark Rare Disease Day 2014, and working with the NIRDP (Northern Ireland Rare Disease Partnership) to hold an all-Ireland event in Belfast on Rare Disease Day.

For more information about Rare Disease Day in the UK and around the world visit www.rarediseaseday.org

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