Remaining politically neutral during General Election 2024


Under guidance from the Electoral Commission and Charity Commission, it's important that Scope remains politically neutral during General Elections.

While we understand that this period will see many passionate discussions and do not want to discourage open discussion, we cannot allow discussions which are purely intended to influence voting.

As ever, please make sure that your comments remain respectful of other people's opinions and keep to our online community house rules.

Support out there. How to get an EDS assessment when housebound. Any suggestions?

Options
sw_03
sw_03 Community member Posts: 2 Listener

Hi, I am asking this on behalf of someone who has struggled to get an EDS diagnosis. She feels that she has exhausted a lot of the private/NHS services and cannot get anybody to assess her in her home. This lady is housebound so cannot access services in the community. Does anybody have any suggestions?

Comments

  • Albus_Scope
    Albus_Scope Posts: 5,321 Scope online community team
    Options

    Heya @sw_03 and welcome to the community.

    EDS isnt the easiest diagnosis to get at the best of times, so I'm sorry your friend is having a hard time. Have you spoken to your local council at all? They may be able to offer some pointers? Maybe even do a needs assessment?

    Albus (he/him)

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
    Want to give us feedback? Complete our feedback form now.
    Opinions expressed are solely my own.
    Neurodivergent.
  • sw_03
    sw_03 Community member Posts: 2 Listener
    Options

    Hi @Albus_Scope - thanks for your reply. I'm actually asking in a professional capacity. If you mean by adult services by local council then yes, they are already involved. Whilst they and OT can do assessments, they are not medical professional so can't offer advice/information regarding her health concerns, one of which she insists is EDS. I just wondered if there is any particular way to get GP's/other health services to assess at home, as she has found nobody will come out to her despite her being housebound? Any EDS advocacy? Thanks

  • Kimmy87
    Kimmy87 Community member Posts: 371 Pioneering
    Options

    There are usually District Nurses and a host of community services delivered in the home such as blood tests, community physiotherapy.

    My Mum is currently housebound and has a DN visit few times a week to change a dressing, they've been able to escalate various things to GP remotely and get prescriptions.

    She's also had a community physio go to her home, currently looking like she will need a GP home visit, both the Physio and DN said they will help support her to get this.

    It varies from area to area whether you can self refer or need a medical practitioner referral.

    Perhaps Google your area name and community nursing to see what's available.

  • chiarieds
    chiarieds Community member Posts: 16,143 Disability Gamechanger
    edited May 28
    Options

    Hi @sw_03 - as someone with the hypermobile type of EDS, then this in particular can be difficult to gain a diagnosis for, as this is mainly based on a clinical impression, as Albus intimates. However, perhaps making her GP aware of the 'toolkit' for GPs may be helpful. Please see: https://gptoolkit.ehlers-danlos.org/ Contacting her GP to make them aware of this may be a way forward in getting her a home visit.

    You can also try the UK's EDS website: https://www.ehlers-danlos.org/ to see if they can help with any advocacy, tho also see this info about advocacy: https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/someone-to-speak-up-for-you-advocate/

    As a retired physio, I also wonder if requesting a physio assessment via her GP might help if all else fails. Many physios are well versed in hypermobility problems whether it's hEDS or Hypermobility Spectrum Disorder.

    May I ask in what professional capacity you're acting?

Complete our feedback form and tell us how we can make the community better.
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.