PGP / SPD My story:

I know that living with SPD is difficult enough, but mix that with a joint condition and it is a whole new ball game. But, that does not mean that you cannot get the help you deserve.  http://www.hypermobility.org/   are a HMS Charity that has guided me through some of the tough times with HMS. If you become a member like i have, you receive lots of important and relevant information, and if your blessed to be in an area where they meet up, in which i am not, then you can discuss things with others who are in the same situation. I cannot update anything else as the Health Psychologist Department have not been in touch despite the fact that i was informed ONLY the Pain Psychologist Dept, have dismissed me. I am losing faith and losing patience and i am very grateful to be able to receive counselling yet again via my GP. But this counselling is not the psychology i need to be able to accept this disability to the full. Many women struggle accepting SPD, HMS and ev...

Social services and my OT have said that I won't be able to get a stairlift at all. So I am going to definately be left without a stairlift: access to bath and shower and toilet till 2010, minimum february and maximum 2012. They expect me to have a quick wipe down downstairs in regards to hygiene and use the commode. Bearing in mind I am having a baby too, due dec 2009!!! The charity/church I phoned cannot even help with a stairlift. We really don't know what to do as I cannot even wash my hair as I cannot do it in the sink downstairs and don't have a table to rest a dish on or anything. I have a shower seat to get into the shower but that is no use to me if I cannot get to the shower. I am going to miss out on being a proper mother till 2012 when my childs 2, and thats if i fully recover. :'( They are taking everything away from me! :just want to be left alone:

I phoned my social worker , immediately she seemed to want to hang up on me and kept demanding who advised me to contact her. So I told her. She was still then more in the attitude of I cannot help with stairlifts, which was repeated throughout the call. I understand there are notes on her system but it would be nice to have the opportunity to explain our circumstance so she can make a decision as to what to do next if anything. She kept asking me what I want from her (in different words not that it matters anyway as its plain english) and I kept saying what can you do? Till the point I said well what is your job role?? I have left the conversation with her, more angry and upset than I was prior to it, feels like I was talking to a wall, and that as far as she is concerned she cannot help etc, although at one point she did say over and over again she feels the need to contact my midwife to state about my nutritional needs etc, and that she will be passing a referral to Family Welfa...