I thought that I would start by saying thank you to you ALL rather than answering indivual blogs.
Syvlia I am on DLA at cares level but my husband upto a year ago was my carer - now I have become his. With all the news about the changes to the disablity l am in the news I am so scared I will lose this help.
We have had my husbands MS nurse visit the home and we have been told we have got to move to a ground floor flat. Not only for his needs but mine as well as I find at the end of a long day I find climbing them the same as facing the north face of Everest each night. Good exercise though and I have found such interestings ways of tackling them. Perhaps rope and tackle would help
I have worked all my life so has my husband so as you have all so righly said I am totally clueless where the benefit system is concerned and working 8.30am to 6pm Monday to Friday does not give me much time to sort things out.
Thank you for comments - I did not know that the job centre has such a thing as a disablement officer. So I think I will start with. that. I am seeing my rummy nurse on the 12th March so again I think it is time to envolve her more fully other than the medical side
I am fighting a loosing battle where work is concerned. If I go to HR maybe things can be talked about and sorted again but the moment my collegue gets out of depth I will be put right back into a situation I don't want be - back on transport.
I am scared at the thought of being totally dependant on benefits and not being able to work. There are so many varibles and un knowns and to be totally honest I don't think I have totally accepted what a rottern disease I have got and will have for the rest of my life. I still feel 18 inside but when I look in the mirror all I see is a grey haired old 42 year old women and I am not quite sure how I got here.
Day by Day I think is the only way I must go as many of us find is the only way to tackle things
As I have been asked I will keep you all posted and by the way thanks for not commenting on my total lack of navigating the british roads
Oh the trials of being a women driver
Love and care to you all
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susanh
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From one woman driver to another............save up for a sat nav! but seriously it sounds as though you are going through such a rough patch and everything is coming at the same time. Good idea talking to the hospital and disablement officer. Some hospitals have a social worker who could help u with all the family health and financial needs or point you in the right direction. They are their to help, there are some very good ones!
Susan, i hope unlike me that you have had a good nights sleep. You don't say whether you live in a council flat or do ypu own your own. If it is the former you will be in a good position to get the council to move you. You will need to speak to speak to the council,also speak to your health proffesionals who will be able to help you. Also your doctor. Hope you get some help sonn.
We live in a housing association flat and my husbands nurse is taking charge of contacting them. I am just so tired all the time. I am going to speak to my nurse and try to get things moving. I see her onthe 12th of March
If there's any way in negotiating your change of housing can u push for one equipped for disabled? It sounds as though a shower would help you a lot from what you said before
Hi Susanh, you sound like your in a very dark scary place at the moment and not having dealt with benefits in the past I don't blame you.
Jobcentres Disability Advisor, is there to help disabled people find work and not advise on benefits and housing, my advice is go the your local welfare rights organisation such as CAB, they can advise on benefits, housing and any other financial concerns you may have. Due to increase in workload it can be a while before your appointment so ring a.s.a.p.
I don't know if your a council tenant of owner of your home, but whichever you are, apply to your chosen council for rehousing and request medical priority. Being assessed as requiring level floor accommodation does not automatically qualify you for rehousing and they do look at any aids/addaptions they can put in place to support you living in your current home.
Have you had a needs assessment? If not contact your local social services department (adult team) and request a needs assessment for both you and your husband. You never know what aids/addaptions (stairlift, walk in shower etc) they can offer you and they can support a rehousing application if you decide you have to move.
Also, there's a benefit calculator where you put your details in, in the privacy of your own home, it calculates which benefits including housing/council tax your entitled to. I've added a link at the bottom of this comment. It's well worth using, I found this invaluable when fighting for my benefit entitlements, especially when Jobcentres call centre staff didn't have a clue.
My friend tol me about this link. I went on last night. I have worked it all out so when my husbands nurse comes on the 7th ans I have seen my nurse on the 12th I am going to take steps
thank you again for your help and support it means a lot
Nothing to add except I think life has really dealt you and your husband a very low blow and you have a lot to overcome with 2 rubbish diseases. I really can't see how DLA and other benefits could be withdrawn when you are exactly those who should be getting it in full so I'm sure that will happen.
If you can make jokes about getting up the stairs then it might help to see these stairs as a metaphor for finding ways around things then. If you have any choice in getting a newer flat with lots of sunlight and a south facing garden or yard to sit out in that would be good? Where I live we have the highest rates of MS in the world and they think the reason for this is Vit D deficiency here in the Nothern Hemisphere so being on the ground floor might have other benefits too. And I agree with Cathie it would be great if you could get a customised flat with disabled equipment for both of you so things are easier all round.
I hur have read your post and wow my heart broke for you. One thing would say with work, there is such a thing as the Equalities Act of 2010 and under this act your human resrouces department should be making reasonable adjustments under this act to put things in place to be able to do your job as you have a disability. Speak to human resources about that because failure to comply to that, if you lost your job and you decdied to take them to a tribunal you could argure your case under this act and you have a good chance of getting somwehere with it. I take it that they know about your illness. The job centre are clueless a lot of the time with people with disabilites, they are famed for giving misinformation or just referring you to other places, give them a try if you can, but see what human resources have to say about reasonable adjustments to help you in your job. If the MS nurse is recommending a ground floor flat, get all the professionals to help with medical reports to your housing asscoation, if you are under one. Your GP could do one, MS nurse for your husband, any consultants he is under, the rhumy nurse for you. However, even with medical priority with housing and all the financial constraitns you may have a bit of a wait, but nothing ventured nothing gained. Has your husband got any other help, social worker or anything, because they can help with forms and housing issues if needed. Also through the local council through social services you can have an occupational assessment carried out, one for your husband and one for you so that they can put a lot of adapations in place to help you both.
In regards to Benefits, there is an excellent web site called the Benefits and Work forum, you have to subscribe to be a member but the information they give on there, and the excellent guides you can download are brilliant and one of their areas is about the DLA. Do ask some of the professionals to help you with letters as it strengthens your case, and CAB can help you with form filling, and applying for any benefit help and they can tell you what else you are entitiled to, and help you apply for it. It seems so much, to do, also get help with how you are feeling, make sure you talk to people if you can about how you are feeling, stress with RA makes things worse. Lots of luck to you and your husband. I have RA and a member of my family has severe secondary MS and what she has been through with the DWP no one should go through. She won in the end, but even so. Hang in there Susannah, and my thoughts and prayers are with you. xxx
Thank you very very much food indeed for thought. I have taken notes and I am making a list, ready to tackle with my husbands MS nurse and my rummy nurse on the 12th
Will keep you posted xx
Hi, I was quite shocked to read your blog. I do hope you can get some help and support very soon. The last thing you need is more stress than you have, but the challenge of the minefield that is the Benefit system is probably worse than the steepness of your stairs.
There is lots of really good advice in all these replies, but I notice you work very long hours. So I can't imagine you have much energy to do all this research as well as your carer role.
I wonder if you dare take a couple of days off while you really focus on all this.
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thank you everyone
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