Shared experience in Continuing Care helps other families
Ian Johnson wrote to us about his own family’s experience battling for NHS Continuing Care funding for his mother-in-law. He has kindly shared his 13 top tips about NHS Continuing Healthcare – to help other families going through the Continuing Care assessment process.
You can read his full story here.
It’s a cautionary tale for certain, but it shows that, with the right knowledge, families can challenge what they’re told within the care funding system – as what they’re told is often incorrect.
Ian’s 13 top tips about NHS Continuing Healthcare:
- Read every website you can to get up to speed with Continuing Healthcare – notably Care To Be Different. Age UK is also good.
- Be aware that you are going to have to do everything, for example chasing people up by phone, etc.
- Take copious notes and read your relative’s care notes every time you visit. See and note what staff are writing down. Don’t be afraid to challenge – we secured an upgraded score in the Communication domain because we got the staff to agree that they had not written down proper notes about my mother-in-law’s poor communication. They seemed to think it wasn’t necessary as it was “par for the course with people with dementia”.
- Take the names of all staff that you deal with – and expect them to be off sick, to take long leave periods and to be on different shifts. They are snowed under with paperwork and can’t be expected to remember the detail when it comes to writing up your relative’s notes – so make sure all important information is written down. Also, be alert to them writing on their hands or scraps of paper.
- Don’t be afraid to argue and disagree – but stay on good terms with staff so they will help; at the end of the day they are also caring for your relative.
- Always expect sharp practice and be prepared for when things are dropped on you with no advanced warning.
- Don’t let them rush you.
- Don’t let the system grind you down; all the while you have a sick relative to worry about, it is not going to be easy.
- Document everything each day – your memory may become confused with all the stress. We feel that the issue of my mother-in-law’s poor care when she fell off a commode and the acute hospital not carrying out other much-needed scans, etc. has helped us, and we keep mentioning this.
- The hospital nursing staff often don’t know the system outside the ward, so expect to be told different things by different people. Do write down their names on each occasion. You’ll probably know more about Continuing Care funding than they do.
- Be aware that assessors may never have met your relative. We were told we had been lucky to have had people involved in the assessment who actually nursed my mother-in-law. Very often it is a stranger – which is why the evidence has to be clear and available in the care notes and assessment notes. Check the notes as often as possible.
- Become as familiar as possible with your relative’s medical condition and day-to-day care needs, so you can start to build up all the links between the care domains in the DST. Ask care staff and other people involved in their care for information, and use the internet.
- Do get Power of Attorney – but don’t expect the staff to know what it is. Just showing them the document seems to work wonders at times.
Read Ian’s Continuing Care story here – about his family’s battle for NHS Continuing Healthcare funding for his mother-in-law.
As well as reading our website and downloading our e-guide, ‘How To Get The NHS To Pay For Care’, Ian also subscribed to our free monthly eBulletin. It’s packed with useful tips about NHS Continuing Healthcare, care fees and other care-related matters. You can sign up today on our website.
We have heard today that my mother-in-law is to receive NHS Continuing Care funding. We could not have done it without your book and website. Thank you so much.
Ian Johnson
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As a nurse I have seen first hand over the last 10 years how the NHS has changed for the worse. What is needed is to stop the blame game and to start looking forward. Most managers in the NHS are good at their jobs but are restricted in a case of the left hand not knowing what the right hand is doing.The NHS has changed dramatically from its original purpose and that’s a great thing, but staff everywhere are feeling de-motivated and put upon, to the point of near burn out.The NHS is in drastic need of reform but the way in which its gone about is completly wrong, cuts are made on a reactive basis without the concequences being considered whilst obvious ways to save and even bring in revenue are ignored because they dont have immediate results.We almost need to wipe the slate clean and start again. Managers front line staff and patients of all professions within the NHS need to be involved from cleaners to paramedics, Doctors and Managers and Nurses and HCAs as well as the patients and politicians and this needs to be a process without political gain, impossible I know but I can dream!