Support out there. How to get an EDS assessment when housebound. Any suggestions?
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
-
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?0 -
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
0 -
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.
0 -
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: 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:
to see if they can help with any advocacy, tho also see this info about advocacy: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?
0
Categories
- All Categories
- 14.1K Start here and say hello!
- 6.8K Coffee lounge
- 63 Games den
- 1.6K People power
- 93 Community noticeboard
- 21.8K Talk about life
- 5K Everyday life
- 52 Current affairs
- 2.2K Families and carers
- 819 Education and skills
- 1.8K Work
- 431 Money and bills
- 3.3K Housing and independent living
- 882 Transport and travel
- 651 Relationships
- 60 Sex and intimacy
- 1.3K Mental health and wellbeing
- 2.3K Talk about your impairment
- 845 Rare, invisible, and undiagnosed conditions
- 892 Neurological impairments and pain
- 1.9K Cerebral Palsy Network
- 1.1K Autism and neurodiversity
- 35.4K Talk about your benefits
- 5.6K Employment and Support Allowance (ESA)
- 18.4K PIP, DLA, and AA
- 6.5K Universal Credit (UC)
- 5K Benefits and income