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Budget for care but impossible to find - no equipment either

Christinepc Community member Posts: 1 Listener
Hello anyone.  I have Classic EHLERS-Danlos syndrome, Complex post traumatic stress and Dissociative Identity Disorder, ( previously know as Multiple Personality Disorder)   I was a Nhs trained Nurse and Midwife with later study at Uclan reading for a Bsc in Homepathic Medicine. My interests include exercise and nutrition/ and it's role in health and recovery   I am living alone now after a year in Hosp and have no mental health support at all but a budget for paying for care, which is impossible to find in my rural area.  I am very lonely. ( aged 65) I take no medication and at the moment I am still managing without disability equipment. 


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    Hi @Christinepc
    Welcome to the community, I am sorry to hear that you are struggling.  I have moved your post over to the Occupational Therapy advisor where I hope @Jean_Scope may be able to offer a few ideas.
    Senior online community officer
  • Daugjtet1
    Daugjtet1 Community member Posts: 3 Listener
    Hello Christine, yes sometimes you feel that you are alone but there are so many people feeling isolated, we could use this platform as a start and see what differences we could make... 
  • Jean_OT
    Jean_OT Community member Posts: 513 Pioneering

    Hi @Christinepc

    Welcome to the community. I’m sorry there has been a longer than usual delay in me responding to your post, unfortunately I have been unwell for a few days.

    It sounds as if you have extensive experience of the health and social care sector, both personally and professionally, so I’m not sure that there is much that I will be able to say that you are not already aware of. However, your post raises a number of important issues that I want to try to acknowledge point by point:

    1. Lack of mental health support – if you have been assessed as needing mental health support and it isn’t being providing you need to flag that up with them. If necessary escalating it up the line of management or making a formal complaint. Alternatively, if the professionals involved with your care feel that at the moment you are not sufficiently unwell to meet their threshold for ongoing services, and you disagree with their decision, you will need to talk to them again. A GP can sometimes be a good person to talk to initially if you are not currently under the care of a community mental health team. It might also be worth exploring voluntary sector mental health organisations such as Sane http://www.sane.org.uk/ or Mind https://www.mind.org.uk/ to see if they can offer you any support.

    2. Unable to obtain care using personal budget – if you have been assessed as needing care, and you are not receiving it, this isn’t a situation that you should allow to go unaddressed. Unfortunately, we have known local authorities argue that if someone has been ‘coping’ without receiving the care that they were originally assessed as needing that this is evidence that person is able to manage ok without it. Therefore, I would advise that you contact the local authority as soon as possible and pursue one of the two possible solutions to this situation: a) that as you haven’t been able to arrange your care yourself you want them to provide it for you instead of having direct payments or b) that you can evidence that your budget is inadequate to get care in your rural location and therefore you need them to look at it again to find a solution that would make it workable (i.e. allow extra money to pay mileage for a carer to drive to your home or offer a more attractive hourly rate).

    3. Feeling lonely – it known that loneliness and isolation can have a really negative impact on a person’s well-being. As Daugjtet1 has already said getting involved with an online community, such as this one, can help to ease isolation. The voluntary sector organisations I have already mentioned might also have some ideas for ways that you could make contact with others. Libraries and community centres are often good sources of information about what is happening locally, although I appreciate that accessing them is not always possible for those living rurally.     

    4. Managing without disability equipment – it is hard to comment on this without knowing what equipment it is that you feel that you need and what steps have already been tried to obtain it. Perhaps you could tell me a bit more about what the difficulty is?

    Best Wishes




    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

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