Lost and don't know where to start

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Joined: Tue Aug 20, 2013 2:53 pm

by MonkeyMama on Tue Aug 20, 2013 3:58 pm

Lost and don't know where to start

I was diagnosed with CFS/ME by my GP after years of feeling unwell and various tests to exclude other possibilities.

However, I do not know where to turn. My GP sent me to a CFS clinic, who discharged me as my anxiety levels were too high apparently (too high for what???? also, the anxiety was the result of feeling extremely unwell for years without being given a reason).

I am at a stage where I do not leave the house, I barely manage the day-to-day running of the house, and I have 3 young children. I gave up work 2 years ago (after my last maternity leave) due to health. I do not have any help or benefits/tax credits. My husband works full time. When I asked the GP and HV for help and advice, I was told by the HV to get an Au Pair to help, but this is proving to be financially impossible. But I cannot take the children to school or pick them up, I cannot take them out/for walks, I cannot go shopping...I am housebound.

Over the years I was given antidepressants but these only gave me severe side effects and increased anxiety. I tried hypnotherapy, counselling, Mindfulness course, acupuncture, etc., I am now trying out various supplements and vitamins, I am pacing and trying to get as much rest as possible...

I am not getting any better, in fact getting worse currently. I have had no luck getting any help or even suggestion of where to go for help from the NHS, I tried contacting the Citizens Advice Bureau - no help at all. I am desperate and do not know where to turn for help - practical and/ or financial.

Any suggestions welcome.

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Sarah Lawrence
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Joined: Wed Aug 07, 2013 11:18 am

by Sarah Lawrence on Tue Aug 20, 2013 5:01 pm

Re: Lost and don't know where to start


That sounds like a very difficult situation. In terms of benefits, you could try claiming Personal independence payment (PIP)-this is designed to meet the extra costs of living with a long term illness or disability. It is for people who have difficulty with walking and getting about and for people who need help with daily living tasks including cooking. Action for M.E have a guide to PIP which is currently under review but please do check our website in a week or two and it should be there. To start a claim for PIP you need to call the claims line on 0800 917 2222. This call will take about 15 minutes and will gather basic information about you.

In the meantime you could try looking at a very good guide published by Disability Rights U.K about making a PIP claim. It is available from the link below.

http://www.disabilityrightsuk.org/perso ... ayment-pip

You could also consider your entitlement to tax credits. You could use an on line calculator to work out if you are eligible. Turn 2 us provide one on their website


Alternatively you could try phoning the Tax credits helpline on 0345 300 3900

You may be eligible for assistance through social services and the link below is to a factsheet about getting an assessment.

http://www.disabilityrightsuk.org/steps ... l-services

There is a lot of information on our website that may prove useful and you are welcome to get in touch with us if we can offer your further information.


I hope this helps and wish you all the best.
Sarah Lawrence
Action for M.E. Welfare Rights Officer

2 posts