Oral Answers to Questions

Andrew Griffiths Excerpts

Tuesday 24th February 2015 Commons Chamber

[Norman Lamb]

I am very much aware of the work that my right hon. Friend and my hon. Friend the Member for Colchester (Sir Bob Russell) have done on this. It is interesting that all the other 10 pilots have continued. They are part of NHS trusts. This is the only one run by a voluntary sector organisation. It is an incredibly valuable service. I was struck by the extent to which people said how much they had reduced their hospital in-patient admissions as a result of the incredibly impressive preventive work that this service provides, and I want to look into it further.

[Andrew Griffiths (Burton) (Con)]

14. What support the Government are giving to people with Ehlers-Danlos syndrome.

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

The Government acknowledge the challenge posed in supporting patients with Ehlers-Danlos syndrome, which encompasses a complex range of conditions with a wide variety of symptoms. Diagnosis and investigation of suspected EDS takes place in dedicated regional genetics clinics, with specialist clinics, as my hon. Friend will know, at Sheffield Children’s NHS Foundation Trust and London North West Healthcare NHS Trust.

[Andrew Griffiths]

People in Burton have raised £130,000 to pay for a life-saving operation that is not available in the UK for Nina Parsons, my constituent, who suffers from EDS. I have another constituent, Sarah Pugh, who is having to pay for vital physiotherapy and an MRI scan. Will my hon. Friend look at what more can be done to help people suffering the misery of EDS, and will she agree to meet some sufferers to discuss the matter further?

[Jane Ellison]

I am certainly very happy to talk to my hon. Friend about his particular constituents. I am aware of the work that he has done in his local area. He will be interested to know that in 2013 the Government published “The UK Strategy for Rare Diseases” precisely to address such issues and the complexities around them, and aspects of that strategy speak directly to the challenges that he has just outlined. May I also take this opportunity to mention that there is an event tomorrow in Parliament organised by Rare Disease UK to mark rare disease day, at which the Under-Secretary of State for Women and Equalities, my hon. Friend the Member for East Dunbartonshire (Jo Swinson), will be speaking?