Oh Jenni... I am so thinking of you right now... mine was classed as severe and systemic although I am so lucky in that its behaving even though its active again... When I went through a really bad patch, I found that info was so short coming... You need so much help but you're not told who to turn to... That was until my rheumatologist introduced me to the hospital social worker, Celia.

She was an absolute godsend and she took a lot of the worry away from me so I could concentrate on my health and keeping strong. She did things like making sure I was getting every benefit I was entitled to, arranged for an assessment with social services. We were even having problems with our mortgage lender because I was off work, a couple of payments had slipped by, they were on husbands back, he was stressing big time and I was usually the one who would sort stuff like that out.

In the end, by the time I was discharged from hospital, I had carers coming in to help me out of bed, get me washed, dressed etc... Celia organised meals on wheels so I was at least eating in the daytime (my weight had dropped to 6st), and we worked out a system for hubby. I don't have children so can't answer what would be available. I know some people have a worry about contacting social services because they think it will reflect on their ability but that is not the case. They are there to help and support you through difficult phases. I found that the hospital social worker was the best option for me because she was aware of my condition, knew my medical background and could liaise with my local team to work out something to suit me and my husband.

Direct Gov is a good resource for info

Sending gentle hugs xx

Hi Jenni

Been thinking about you today and am relieved to hear Gemma's move has gone well. Hope she settles in really quickly and positive outcomes ensue.

Glad you made it through the day and can now concentrate on your own needs. Hope you are able to sort out some help quickly and the stress you have been under settles down a little. Fingers crossed the medics can come up with a suitable treatment plan for your problems very soon.

Thinking of you Jenni,

Lyn x

Hi Jenni,

So sorry to hear that you have been left like this again and believe services could do better. If you call your local SS and ask to speak to the Duty Adults Physical Disability Team a duty social worker should be able to put in an emergency package of care (have sent you an e-mail).

gentle hugs,

love,

Barbara
XXXXXX

Oh Jenni, I'm so sorry you're suffering like this. You've been given lots of good advice, so hopefully you'll get a good package of care. I'm glad that Gemma's settled, hopefully that will take some of the worry off your shoulders.

I'm sorry I can't be of more help, but I'm thinking of you and the family.

Love Lyn