Suncream: I read with some horror this morning on... - LUPUS UK

LUPUS UK

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Suncream

Tonk profile image
Tonk
11 Replies

I read with some horror this morning on BBC's red button news, that they are thinking about cutting sun cream from the list of prescription items that are available on the NHS.

I feel the need to email my MP to say how important sun cream is for many of us whom suffer with SLE/Lupus and how much financial hardship it may cause many.

I wonder if Lupus UK are going to lobby parliament on this issue.

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Tonk profile image
Tonk
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11 Replies
Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Tonk,

I am in the process of contacting some other patient organisations that have a particular interest to see what sort of group action may be taken to prevent this. Keep an eye on here for any updates about how you may be able to get involved.

Tonk profile image
Tonk in reply to Paul_Howard

OK, thanks for the info Paul....Much appreciated.

PMRpro profile image
PMRpro in reply to Paul_Howard

Paul - the Guardian is asking for comments about the gluten-free part of the threat. Perhaps contacting them may bear some fruit too? Most ordinary people would never think about sunscreen being a medical necessity and my immediate thought was about lupies.

What I found mindboggling was the concept that gluten-free food and F50 sunscreen are LOW COST ITEMS!!!! For on holiday maybe - for everyday, not so much...

Lupiknits profile image
Lupiknits in reply to PMRpro

Absolutel Pro!

onamission profile image
onamission

I have not been diagnosed with Lupus but have many symptoms. I went out Saturday with in minuets of the sun coming out I started to bruise would sun tan cream stop this

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to onamission

Hi onamission ,

It is important to protect yourself from sun exposure. You can read more about this and get tips in our blog article at lupusuk.org.uk/coping-with-...

onamission profile image
onamission

Thank you Paul that all makes sense now since being in the sun I have felt sick and flu like symptoms. I also felt breathless but I'm being treated for COPD

nigelsmum profile image
nigelsmum

I cannot get sun cream from my GP as he refuses to believe that my Lupus / UMCTD reacts in anyway & told me that he'd never heard of it ! Previously tried to give me HRT ! Now telling me that he is not going to refer me to neuro (as requested by consultant) and doesn't see the point in me keep sseing all these people - but gave me a letter for counselling !!!

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to nigelsmum

Hi nigelsmum ,

Have you considered changing to a different GP? You can find information about doing this towards the end of our article here - lupusuk.org.uk/getting-the-...

Ianrussell69 profile image
Ianrussell69 in reply to nigelsmum

So sorry to here this do yourself a favour Get a new dr just showed my wife your post she would not let me say what I really wanted to say .

nigelsmum profile image
nigelsmum

Thanks for your replies. This is the GP practise recommended as he 'has an interest in all that ' ! Seen others before, think I will have to change surgeries. Last year the lab didn't process my monthly methotrexate blood test due to a problem so the surgery just ignored it. Having lots of problems at the mo as my hospital appointment has been moved from February to April & now to the end of June. I had to have injections in my shoulders last year & now after couple of months of physio really need them doing again, phoned rheumy nurse - no reply, tried again last week - no reply, so phoned secretary - guess what no reply. GP wont do it as I am having 'active treatment ' - would love to know when this is all going to go away and stop having treatment.

If still not getting anywhere next week I think I will write to consultant - but trouble is I have been waiting for pain clinic appointment since September 2015 & ENT referral since last summer so don't hold out much hope

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