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

sw_03

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?

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Albus_Alumni

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?

sw_03

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

Kimi87

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

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?

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