Two videos for Lupus awareness month that has been created by a young lady called Emma, AKA ” Little Lupie.”
Writing to your MP for LUPUS awareness month
The committee would like to invite you to raise the awareness of Lupus with your MP by contacting them, by letter, as part of Lupus awareness month. Our new committee member, Sara Booth, is championing our cause with members of the house of Lords and in the lobby at Westminster and we need to support her work on our behalf by making our MPs aware of our concerns. We can also raise awareness on our social media accounts, Facebook, Twitter, WhatsApp and Instagram. Please use the letter pro forma below to help. As a group we have a real chance of raising awareness with those who make the decisions that affect our lives. If you would like any help or advice please contact Sara on firstname.lastname@example.org and she will do her best to help.
- Do you simply want her/him to know a bit about lupus and its impact on you?
For example, Heidi Allen said that she understood how important the issue of restrictions on medical immigration from overseas had become because many of her constituents who worked at Addenbrookes wrote to her. Therefore writing to your MP will alert him/her to the impact of SLE and the many different sorts of problems it causes.
- Do you want her/him to highlight something with a specific minister e.g. Sarah Newton the minister for disabled and work who needs to know about specific problems with work
- E.g. Ester Mc Vey (Minster for Work and Pensions) who clearly knows very little about the benefits system and illness, let her know how it works and what a fluctuating condition is (you could get a friend to write if you wanted to be anonymous).
- or ask your MP to write to the minister who deals with the area you are most concerned about e.g. the Minister of health if it is about prescription charges and over the counter medication e.g. sunblock
Below is a recent weblink to Sarah Newton and Ester McVey before the work and pensions subcommittee – might give you some ideas of misconceptions that need correcting.
https://parliamentlive.tv/event/index/9c1e1d5b-636c-47b4-85e2-d3b9dff28d33 ( to see Ester Mc Vey and Sarah Newton in Parliament)
Bear in mind –
- MPs get thousands of emails a day, often from professional campaigners, you might be better to take the time to write a letter, you can still send copy by email
- Write in your own words, MPs are suspicious of ‘rote emails’
- Keep it brief, keep it factual
- Don’t rant
- make it clear what you need/people with Lupus need/carers of people with lupus need in a personal way but without being overly emotional
- probably best to ask for one specific thing rather than everything
- write about your own situation, making it clear these problems are common in people with lupus
Other website advice on writing to MPs:
(there is a lot more, google writing a letter to your MP for other ideas)
You could also use social media instead:
- Tweet everyday of October, connecting with as many different relevant interested parties as possible
- Maybe tweet on a different aspect of LUPUS every day
- Connect with as many different hashtags/groups as possible including LUPUS foundation of America
- Only post images you would be happy for anyone in the world to see
- Look at the ways that other people portray their condition online – with SLE highlighting invisibility is important, but needs imagination! See some American sites hosted by people with SLE
- Post images that are relevant to lupus e.g. photos of articles or text, eg your prescription with name/address of you and GP practice obscured
- Photos of equipment you need e.g. bottles of sunblock, UV protection for lights to keep you as well as possible – dialysis equipment etc
Other people you could write to
- Journalists who are interested in disability issues e.g. Frances Ryan of the Guardian and Ian Birrell of the Independent (google their previous articles)
- The Chair of the work and pensions subcommittee, Frank Field, very interested in unfairness of benefits system
- A local organisation like a school highlighting, fluctuating attendance records necessary for children with SLe
- Your union, so that they are aware of issues around lupus
- Women’s Hour (ahead of time) asking them to do a feature on SLE in October
- Your local paper, to raise awareness of lupus
- Any other organisations that you think may be able to change their practices to help people with LUPUS live better lives.
Ideas for a letter/email (look at your MP’s website for where to send it and other info) –
Your address here (they need to know you live within their constituency, you cannot write to any MP you choose about a personal predicament, you have to write to your MP)
Their address here if it’s a letter, unnecessary in email
(Look at your MP’s website for details, they often want you to write to the House of Commons, (The House of Commons, Westminster, London, SW1A 0AA),
but some want you to write to their constituency office.
your email and/or mobile phone details
Dear MS Allen (for eg.)
RE: put in the subject headline you want them to consider here – e.g.
Lupus makes it difficult for me to work
I have lost my job because of Lupus
Lupus is a serious condition but you can look normal
Lupus needs to be specifically mentioned in the Equality Act with Multiple sclerosis
I am one of your constituents who lives with lupus (SLE, systemic lupus erythematosus). October is lupus awareness month and I am writing to let you know about the problems I have because of my lupus with e.g. trying to work/being corrected assessed for ESA/PIP/ being as active as I can without being penalised by the benefits system.
LUPUS is an incurable (lifelong) inflammatory disease that affects every part of the body. It fluctuates, it is very unpredictable, it si invisible so that I look quite well even when I am ill and it causes terrible fatigue.
Because I do not look ill, because I am young and the LUPUS is quite rare I do not get the support I need to live as healthily as possible.
My particular problem is…..
The government could help by ….
One idea for letter At the moment government policies actually make my disease worse ( e.g.) because when I go to benefits assessments the assessor often knows nothing about LUPUS and turns me down. I often have to go to appeal to get the support I need which costs the state extra money. The strain of trying to explain my illness to an untrained person who belittles me makes my disease worse with worry. I attend a centre of excellence in Lupus care at Addenbrookes where I have been advised not to work more than XXX hours a week whilst my disease is so unstable.
I am penalised if I try to do any work when I am able to, although I supposed to be able to do 16 hours work a week on Universal Credit. This is because I am highly skilled and highly trained. However I am only encouraged to do low paid work such as waitressing or working in a shop on the minimum wage. I am physically incapable of such work but could do about four hours a week as an accountant, at my own pace from home. This could help the skills shortage in a small way and help me to have better mental health.
The government needs to reform assessments for benefits so that only appropriately trained staff are able to perform these and they need to listen to letters from specialists. The government needs to be aware of the need for different patterns of work for those with fluctuating conditions like LUPUS and to support us to work in the way we can, not penalise us for trying. Naming LUPUS, like MS in the Equality Act would help to raise awareness of this disabling disease that affects young people throughout their working lives. Many now live on very low incomes, with increased costs to themselves and a loss of much needed skills in the workforce. The ‘hostile environment’ for those with long-term health problems and disability needs to be stopped.
I look forward to hearing from you and from Sarah Newton’s department about ways the government intends to help people like me.