Written by: Kofi Dwinfour

This week I want to up date some past blogs.

citizens advice bureau logo

First up, Do Citizens Advice NOT Care about skin disease patients?

It seems I had a massive over reaction to Andrew Seager’s email message to me. One of our latest volunteers, Mandy Calder, was going through our Facebook page and noticed the discussion about Citizens Advice following my blog post. She tells me that:

“There are currently massive changes going on with our English counter parts (i.e. Citizens Advice) and this has resulted in re-organisation of the information team… so without knowing details this may be the resource issue mentioned in the email. I can assure you it would not have been a discrimination issue.”

My thanks to Mandy for making things a little clearer. Mandy also had some great ideas about how we can provide skin disease patients with important information about benefits and other entitlements. So be on the lookout for that in the coming months.

Next, we have been getting some very positive reactions to our campaign highlighting how skin disease patients (and others) can save money on their multiple item prescriptions. As this campaign gathers momentum, the next stage is to campaign for the abolition of charges for prescriptions issued to sufferers of long-term chronic skin diseases. The group, the Prescription Charges Coalition (PCC), is doing just that. The PCC is made up of more than 30 campaigning charities and other bodies. They have a great website full of researched information to support their case.

Let’s kick some facts!

  • Prescription charges have increased for 33 of the last 34 years and the list of condition exemptions was drawn up in the late 1960s
  • In a February 2014 survey of 5,000 people with long-term conditions, 37% said that prescription charges had prevented them from following their prescribed treatment.

I don’t know about you, but having to decide between eating and taking life-saving medicines is a tough one. Sign their petition, now!

NICE logo

Moving on to NICE and their advice about vitamin D supplements for at risk groups. I have now received a response. Here is my query:

With regard to guidance PH56 Vitamin D: increasing supplement use amongst at risk groups. Can you tell me how this may specifically affect people with skin diseases, which mean that they are advised to avoid sun exposure. Are they among the at risk groups? If so, should skin disease patients who have been advised to avoid sun exposure be seeking to start taking Vitamin D supplements (if they don’t already do so), or increase their use if they are already taking Vitamin D as a dietary supplement.”

Here follows the response of NICE:

It is important to note that that our guidance on Vitamin D: increasing supplement use among at-risk groups was developed under our public health guidance work programme. Public health guidance makes recommendations for populations and individuals on activities, policies and strategies that can help prevent disease or improve health, however it is not designed to provide clinical advice about vitamin D supplements for people with skin diseases. I appreciate that this an important issue for you, however we are unable to provide specific advice on the scenarios outlined in your email. As with any NICE guidance we would always advise that people speak to their health professional to check what the recommendations mean for them.”

This response did not fill me with great confidence – sounds like a mealy-mouthed disclaimer to me. Clearly skin disease patients are not recognised as an at risk group and therefore are not given any level of priority. So far, same old same old. In a recent blog, The Burden of skin diseases, I questioned why skin disease is not taken seriously as a debilitating disability, if not physically, certainly mentally and emotionally. It’s all very well NICE saying that they rely on health professionals to pass on their advice. However, let’s not forget that even Health Education England (HEE) agrees that:

“The initial training of GPs in dermatology is inadequate.”

So how can we be sure that skin disease patients will get the advice they need?

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Rare Disease Day is 28 February. What are you going to do?


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