Hi all / Stroke Assoc - does anyone have any advice on how to interpret the information in the needs domains in the decision support tool? (if you haven’t been through this then you won’t know what I’m talking about - if you have then I’m hoping you’ll have lots of advice!)
I am appealing the NHS decision regs funding for Mum and need to know more about how they define ‘immobility’ (in the mobility domain) and ‘communicate’ in the communication domain. Mum is paralysed and can’t use a mobility scooter or powerchiar due to cognitive issues so can I say that she is ‘immobile’. Mum can talk and sounds like she knows what she is talking about - but her answers can’t be relied on as she has no short term memory and is totally confused - so I assume that she is ‘unable to reliably communicate’ - but I need to get this right as otherwise will lose the appeal. Can’t find any info to help in the NHS Framework or Guidance Notes. Interesting that there isn’t any discussion on this Forum about NHS CHC as such a minefield - or maybew there is and I haven’t found it. Help!
@Sarahjen i can’t help as not been through the process but would it be wise to seek advice from somewhere like Citizens Advice? These things can be a complete nightmare.
Hope someone on here can help. Good luck.
Hi, not sure how useful I can be, as my mum hadn’t had a stroke but was suffering with Alzheimer’s disease. We were funding her care for 2 years when she took a turn for the worst and was placed on end of life care. At which point she qualified for CHC. She was bedridden, not really eating or drinking, (in fact she weighed about 5 stone when she passed away last year). Despite being on end of life care, she was reviewed regularly.
It’s definitely a minefield and Iwould suggest maybe Age Concern or CAB might be able to help in some way.
I hope you find some help and guidance soon. Feel free to contact me durect if you have any other questions and I am happy to help if I can.
Regards and best wishes to you and your family.
Sue
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@Sarahjen - let me look into this and ask some of the team here about it, see if anyone can help clarify things.
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@Sarahjen Hi,
My mum and I went through this with my dad (alzheimers) so not related to my stroke. We had the same queries about what is actually being assessed and found the following to be the best description https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1113039/NHS-continuing-healthcare-decision-support-tool-guidance-2022-accessible.pdf.
Mobility is covered on pages 35 to 37 with communication straight after from pages 38 to 40.
Hope this helps
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Hi @Sarahjen
I asked a few colleagues and sent a message to our Helpline. One woman said she does have some experience with this kind of form and I’m just waiting to hear back from her on any advice she can offer.
Our Helpline said this:
Thanks for getting in touch. I’m sorry to hear about the difficulties your family are facing with CHC funding regarding your mum.
It’s not something that we can advise on as people that use and interpret the decision support tool undergo training to use the tool.
The following organisations that specialise in NHS funding and the support decision tool may be helpful.
Beacon are able to provide free consultations of up to 90 minutes with an independent NHS continuing healthcare adviser. This is funded by NHS England. They also have a navigational toolkit which may be helpful.
Beacon
Telephone: 0345 548 0300
Website: www.beaconchc.co.uk/
Care To Be Different is a specialist online information resource about NHS Continuing Healthcare funding in England. They offer free telephone advice and a Nurse Advice Line Service which is paid for.
Care To Be Different
Telephone: 0161 979 0430
Website: https://caretobedifferent.co.uk/
It may be useful to read the decision support tool guidance which is available in different formats on the gov.uk website. Each section is explained in further detail.
GOV.UK - NHS continuing healthcare decision support tool
www.gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool
I hope this is helpful. If you have any questions or would like to talk, you are welcome to contact our helpline on 0303 30 33 100.
Opening Hours
Monday - Friday 9.00am to 5.00pm
Saturday - 10.00am to 1.00pm
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