I will be brief. I pay tribute to the hon. Member for St Austell and Newquay (Stephen Gilbert) for securing this debate. Ahead of it, 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
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“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.
