What financial help is available!!!!!

Hi Robert. Thank you for your reply. I have already contacted them, but I do not fit the criteria. I am able to walk a short distance and can manage at home to potter and get around, which means I am not eligible. 

Yes Robert's right.I get the £220 a month PIP payment.You need to phone up ESA 0345 608 8545.On there you go to the claim new PIP.They then send out a form.Once you get the form.Make an appointment at your local CAB to have help with filling in the PIP  form.Take all information you think relevant with you.If you can also.Get your doctor,and any specialist to write a letter for you detailing how hard your life has become.I have PSA,and many other problems.I feel for you.The pain is something else!! At least we have this site to support each other.There are so many lovely kind and caring people on here.So at least that's one consolation  

so sorry to hear that, when you say a short ditance how far? and is that with the intravention of pain killers? I will mesage you 

Hi Steve. Thank you very much. Maybe I will try again! I certainly need the money! My wages are going to be £330 a month for the remainder of my sick leave. It is so scarey as I dont know if I am even going to be able to go back to working! 

You are so right about all the lovely people on this forum. Even though everyone is suffering, they are always trying to give positive advice to others. 

Thank you again x

Thank you Robert!

You need to score 12 points to get money so when doing it, although it feels like your pride is being ripped apart think of your worst day. For example when they ask do you need assistance getting dressed you can answer yes if it means you have to sit on the bed or floor to do it.  Every question think on your worst day. Like can you clean yourself to an acceptable and hygienic level, answer no if you have days when you don't have the energy to bath. You need as many ticks as you can get without lying of course. But remember on the days when the pain and fatigue get too much that sometimes you can't do what you want so you can tick boxes that maybe you wouldn't. If that makes sense. Anyway if you need any help I'm always here for you. 

Thank you so much Steve. That advice is so helpful. I phoned them this morning and spent goodness knows how long on the phone repeating my details over and over again! ha ha. I am waiting for the next stage now. 

Thank you again x

Hi Steve I was diagnosed with PsA in 2010 I also have DDD in my Spondilitus and Spondilosis in my neck.I suffer from anxiety and low mood as a result of the condition. I applied for DLA and was rejected on the grounds I don't fit the criteria. Surley this can't be right.

Hi Stuart.

Sorry that you are suffering so much, especially with anxiety. I have been down that road myself. Did you have to wait long to get told that? I applied ages ago and still havent heard anything. Did they not explain what part of the criteria you didnt fit? Can you appeal against that? I also have PsA and spondilitis with a chronic back problem running alongside. I am unable to work at the moment and am really hoping that I get some financial help. Do you manage to work and get around much? 

Hi Karen

Thank you. Its lovely to hear from you. Sorry, I have not logged on for a while, as I went through a really rubbish time.

I saw my specialist nurse after Christmas and she saw how bad I was (struggling to sit or stand). I was also taken off of Methotrexate as it had caused inflammation of my liver. She arranged to meet with my consultant (a locum), to come up with a plan of action. She phoned a few days later and said he thinks I might have piriformis syndrome and that I should google it to find out more information!!! I did google and saw that this should be diagnosed through an examination (which I hadnt had) and it also didnt match my symptoms. I complained and had to have a meeting with him, where he repeatedly appologised to me. I asked to get transfered to another hospital. 

I had high hopes for the next consultant! Unfortunately he quite clearly hadnt read my notes properly and didnt listen to what I said. He wrote in his letter that I appear well, can sit and get up with ease and can walk with no problems!!!! He also disagreed with the diagnosis of PsA and Anklyosing Spondylitis. He told me to go away for two to three months, still without any meds (apart from a cocktail of painkillers) and to see how I get on! This became one of my very low points as I was so confused. My lovely GP, wrote to the hospital and complained on my behalf. 

I got seen two weeks ago by the specialist nurse. They think it is a chronic back condition that I will be left with and have said I do have PsA!!!! They are putting me on Sulfasalazine, which I am still waiting for! I am concerned that it is spondlylitis as I am HLA-B27 positive and have woken with low back pain and stiffness for a few years now and I also get chest and heel pain. They said because my bloods are fine and the MRi only shows degenerative changes, its shows it isnt. I have completely lost faith in everyone apart from my GP. On top of this, I have had to decide on re-deployment as I really dont think I will be fit enought to work with infant children again. I really dont know if I will even be able to hold down a job to be honest with you. I am only 46, but feel 90!!!

Sorry for my moan!!!! How are you doing? Did the Stelara work?? How is Sheila doing?

Hope all is well xxxx

Hi, I am so sorry to hear what you have through,with the locum consultant, but unfortunately this does not seem that rare!!!!! I saw one in February, thankfully my husband came with me. I explaind that I was having real problems with my mobility, he did not even comment !!! He said that my ESP and CSR are level were lower and thought I had Fibromyalgia, and he thought I should take Amitrip, he just did not seem that interested. In the end my husband stood up and said that had been a total waste of time and we left. When I had a copy of the clinic letter, he had not included the request for the GP to prescribe Amitrip!!!!! It took me a week to sort it out. Rhuemy nurse eventually found my clinic notes, and he documented that he would request a scrip!!!!!!!  I was so angry, and told my nurse that it was not at all good enough. These consultant appointments are so important to us.

Regarding Stelara, there is no improvement at the moment, waiting for the third injection next month, I am still trying to be positive, about everything , but it now getting rather wearing.

I am so sorry that you have all this hanging over you, it doesn't help. I am so grateful that I now do not have to worry about work. I am 60 in a couple of weeks, I honestly thought that I would work until 66, but you never know what is around the corner.Take Care xxxx   

Hi Karen. I cant believe you have had to struggle with consultants too!! What is going on?? They really dont know how much they have an impact on our lives!! It takes such a long time to get these appointments and its so hard to not get your hopes up for some decent help and answers!!!

I would be interested to hear from anyone who has a good consultant. We could all ask to be transfered to them! ha ha.

So sorry that the Stelara hasnt kicked in. How disapointing. I have been thinking of you and Sheila. Cross fingers the next injection does something to help with your symptoms!

Take care xxx

Hi, I see my own female consultant next month, who has always been so supportive, always takes time to listen, I never feel rushed. She definitely gets my vote.

I do not know your situation, BUT if you rent your house you may be able to claim Housing Benefit. A friend found herself in a simular situation, and was able to.

Take care xxx 

I have a mortgage, So wont be able to claim that.Thank you for the thought though x

Ok, it was just a thought. If I come up with anything else I will let you know.

CAB may be the best place for advice

Take Care xxxx

Thank you x