Kaleidoscope

Thinking About The Future

In the final thread, we asked people to let us know know what their ideas might be regarding services and support for people with Lupus. That is, if they had to design a comprehensive service for people with Lupus and other auto-immune conditions what would it look like - who would staff the service, what services would be offered and where would they be based etc?

Vicky

...I think that there needs to be more localised services...

Kaleidoscope

Esme

...I'd like to see a lupus education programme rolled out to all GPs...

Kaleidoscope

Heidi

...my employers have been educated, but still do not always pay full attention to the illness...

Kaleidoscope
Kaleidoscope

Vicky's Story

I think that there needs to be more localised services for people with Lupus - I live near Brighton and the closest is in London, which takes a bus ride, a train ride and two tubes to get there. My Lupus seriously affects my joints and therefore travelling this distance to be seen is a little ridiculous in my opinion, and at these appts I generally meet people at my appts who have travelled even further, sometimes 4 or 5 hours. I would like to see a combination of staff working within a Lupus team, including doctors and nurses, but more specialised staff including nutritionists, physiotherapists etc, to help advise and provide support specifically around Lupus, and related illnesses.

I look after my mother and my sister who have lupus too, so between us all I end up travelling to the Lupus unit in London at least 4 times per year, which can be costly, very time consuming and more than anything, very tiring!

I agree that there should be nationwide training for GPs and other professionals involved with people with Lupus.

I believe that there is a role for social workers in this field, in supporting people to get the support and resources they need and pulling all services together.

Kaleidoscope

Esme's Story

I'd like to see a lupus education programme rolled out to all GPs and to every medical student, to make them more aware of the variety of symptoms and the need to refer to specialists for diagnosis. So many of us struggle to get beyond the GP stage and therefore our diagnosis takes far longer to obtain than it should, which can result in serious organ damage or strokes for some people.

I'd also like one stop lupus clinics to be set up in every city. It could run as often as the demand for that area, so not necessarily every day, some areas may only need it weekly. But it would have all the key specialists you are likely to need in one place, including psychiatrists, mental health nurses and counsellors, alongside physical health professionals. Even better if the clinic had a financial advisor, as lupus affects our employment and our insurance. A nurse to spend time supporting family members would be helpful too.

If necessary, the staff at the lupus clinic could inform and advise other specialists when you go into your local hospital for operations or treatment unrelated to

Kaleidoscope

Heidi's Story

Suggestions I would make would be the education of medical staff, the mental health support, localised clinics specifically designed for Lupus patients and most definitely a financial advisor and occupational health advisor.

Luckily my employers have been educated, but still do not always pay full attention to the illness and therefore put extra demands on me above and beyond the role of my job, which is not always easy to decline. I also am unable to now get life insurance therefore have nothing to leave my loved ones and am unable to move home to a more suitable accommodation (i.e. having loads of steps to my home which on times cannot manage).

For me personally, it is making me more determined to manage my illness in such a way that the level of support I need from professionals is minimal. Thus hoping that eventually am able to get life insurance in order to move home and plan for the family upon death.
My fear however, is that this will be a tough job and could take many many years to accomplish if at all.

University of Hull | School of Social Sciences | Transitions to Illness