Fiona
Bruce MP raises awareness of Raynauds and Scleroderma in Houses of Parliament
Speaking in a
debate in the Houses of Parliament last week, Fiona Bruce praised Alsager based
national charity the Raynaud’s and Scleroderma Association and raised awareness
of the work they do and the NHS assistance needed for Raynaud’s and Scleroderma
sufferers.
Speaking in the House of
Commons, Fiona Bruce MP said
“Ahead of
this debate, I have been contacted by an exceptional charity in my
constituency, the Raynaud’s and Scleroderma Association, of which it is my
privilege to have been patron for many years. That outstanding charity was
founded and is based in Alsager in my constituency, and it is the only charity
providing national support, research and help for people suffering from
Raynaud’s and scleroderma—two debilitating conditions that affect the digits
and the autoimmune system. The charity also supplies support to their carers.
I am glad to take the chance today to pay tribute to the
work that the RSA does every day for people suffering from those debilitating
conditions. Despite working from a tiny terraced house on limited resources, it
has raised millions of pounds to fund national treatment and vital research. It
has helped the country’s understanding of the conditions, as I have heard
personally from clinicians and doctors. As a result, I believe that the RSA’s
concerns about the proposals that we are discussing today demand a hearing.
The RSA’s work makes a huge difference to the lives of
those affected by the conditions, especially those with Raynaud’s when their
condition develops into scleroderma, which is rarer and more serious. The
progress the association has made in research into and treatment of the
conditions is outlined on its website. Its chief executive officer, Elizabeth
Bevins, contacted me prior to the debate because she is concerned about the
plans we are debating, which could reverse the progress that has been made over
recent years on services for these rare conditions. I will quote from
Elizabeth’s letter to me:
“Having followed
the development of NHS England with interest since its launch…and having
welcomed Specialised Services commissioning at national rather than local level
as an important cornerstone of the plan to help eradicate any ‘postcode
lottery’ issues, I am now concerned at the proposed changes on national
commissioning for specialised services.”
She added that she shared the concerns of the Specialised
Healthcare Alliance, which she thought had articulated the position well in the
statement it released on the issue. That statement says:
“Specialised
services are best planned on a national level–in the past patients experienced
very different levels of access to specialised care.”
Elizabeth is concerned that NHS England’s plans to let
local commissioners share responsibility for commissioning such complex
services, thereby incentivising them to direct funding to local priorities,
could result in a patchwork quilt of provision. An example is the prescription
of the drug Bosentan for scleroderma. The drug can often help to prevent the
formation of digital ulcers. The RSA is extremely concerned that access to that
drug and others for the rare conditions to which I have referred should
continue to be “equitable and consistent”.
These diseases are rare, so shared knowledge across
clinicians nationwide is essential. Scleroderma affects only about 8,000
patients in the UK. The RSA has stated that
“treatment is best
and most effectively made from a few specialist hospitals across the UK…who
work with a patient’s local hospital to manage what can be killer diseases.”
I hope that, in continuing with the proposals, Ministers
will take into account the concerns of the RSA.”
Elizabeth Bevins, CEO of the Raynaud’s and Scleroderma Association said “It is so important that the voices of those
who have rare autoimmune rheumatic conditions, namely scleroderma, are heard
now and in the future.”
