Perseverance and stubbornness pays off, so don’t give up!

Perseverance and stubbornness pays off, so don’t give up!

Care To Be Different was originally set up by an individual who battled against the NHS system for 4 years whilst fighting for NHS Continuing Healthcare Funding (CHC) and justice for her dear parents.

Care To Be Different was borne out of her experience and the desire to help others going through the same NHS Continuing Healthcare Funding assessment or appeal process – seeking free fully-funded care for her parents. The founder of Care To Be Different wrote:

“I believe Continuing Care is one of the biggest scandals in elderly care in the UK. After my parents died, I realised that my experience and knowledge would be valuable to other families, and that’s why I set up Care To Be Different. I also knew that I could do things a lot more quickly for clients – and that I could make the process easier for them.

Plus, I understood the tears, pain and anguish that families go through and how important it is to have someone on your side who is not simply helping from theoretical knowledge, but who has ‘been there and done it’ and who understands the ins and outs of the system. I also wanted to put a lot of my knowledge together in a format that families could access easily; the e-guide [now also available in paperback], ‘How To Get The NHS To Pay For Care’, has now proved valuable in helping many clients successfully obtain Continuing Care funding.

My message to anyone who has an elderly [or adult] relative in care and paying care fees is simple: challenge everything you’re told and don’t take no for an answer.

The NHS was set up to provide healthcare and nursing care, free of charge at the point of use. That hasn’t changed – it’s enacted in law – and just because someone is old and in a care home doesn’t mean the authorities can change the rules.”

You can read her full article here which will resonate with many of our readers:

Fighting for NHS Continuing Health Care: Why Care To Be Different Was Created

Care To Be Different is not a claims management company. Care To Be Different exists purely to offer FREE information and resources to all those in this arena who need help, guidance and support pursuing their entitlement to NHS Continuing Healthcare Funding. It also provides a better understanding of the whole assessment and appeal process, often helping families to realise that their relative is not in fact eligible for CHC Funding, and thereby avoids wasting their time and energy, and also the NHS’s time, in pursuing frivolous cases that simply have no prospects of success.

Of course, for some families the complexity of the funding concepts and procedures involved and the patience required to plough through 167 pages of the National Framework for NHS Continuing Healthcare Funding can be overwhelming. Especially when combined with the prospect of fighting the NHS for funding. Our readers have often described the whole CHC Funding process as ‘tortuous’, ‘exhausting’ and ‘daunting’. Plus, there are high stakes at play. The risks of failure and paying a fortune in care fees can be financially crippling and erode family assets and savings which were being saved for a ‘rainy day’ and for the benefit of future generations. Over the years, there have been many press articles featuring families who have had to sell their home to pay for a spouse, parent or other relative’s care fees.

Families can, of course, seek eligibility for CHC Funding themselves, and our Care To Be Different website is renowned nationwide for providing lots of useful free information and resources to help them along their journey. But, for those who want help, there is always the option of seeking expert advice and advocacy skills from professionals who specialise in this particular field. They can take the strain, stress, anxiety and time involved in making an application or pursuing an appeal for NHS Continuing Healthcare Funding off your shoulders, so you can focus on what really matters – looking after your loved ones. Visit our one-to-one page if you want professional help and improve your chances of success!

You only have to read Admiral Matthias’s article, to realise how stressful and time-consuming applying for NHS Continuing Healthcare Funding can be. ‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’

We would like to share with you a recent testimonial from an individual who wrote to us praising the good work that Care To Be Different do and which greatly benefited her successful application for CHC Funding. She asked us to share her comments (anonymously) to help others in the same position and give them encouragement to persevere.

“As a family we would like to pass on our thanks and appreciate to Care To Be Different for the guidance they provided to help us through the harrowing CHC funding process.

The information enabled us to be better prepared for the fight we had to endure.

In 2014, our relative suffered a severe stroke, having been a very fit and well man. The stroke left him totally dependent on others for all aspects of his care. He was paralysed on the right side, was non-verbal and doubly incontinent. Due to swallowing issues he was given a PEG feeding tube.  

Upon leaving hospital 2 months later, discharged into a care home, he was granted CHC funding. This continued each year as at each review it was deemed that there was no change/improvement to his condition.

However, at the review in August 2018, the assessors decided that he needed a full assessment. We were not given a reason for this. And so the battle began!

At the assessment in November 2018, despite representation from the family and the care home nurse, it was decided that he was no longer eligible for CHC funding. The fact that his condition had worsened seemed to matter not (in February 2018 he had been blue-lighted to hospital with sepsis and heart failure and was discharged from hospital back to the care home on end of life care). It seemed that the assessors had already made up their minds.

We took our appeal to LRP in April 2019 who again agreed with the ineligible decision.  

Our next step was appealing to NHS England.  This is where the support from CTBD came in. Although we always believed he was eligible for full funding, the information from articles on the website and hints given on dealing with these assessments were vital and gave us the confidence to proceed. We had also purchased their book “How To Get The NHS To Pay For Care” which gave invaluable advice.

Prior to the meeting we had done a lot of research and had gathered a lot of evidence including care home records and diary entries of our own observations. It was an arduous task and we spent many hours going over and over our facts and evidence. The whole case file ended up being nearly 400 pages.

Due to Covid 19 restrictions, the meeting was conducted virtually via a phone link rather than face-to-face. This was at the beginning of June. It was a bit daunting being questioned by 3 panellists about the needs and condition of our relative, but by the end of the 2 hour meeting we felt that we had finally been listened to although we still didn’t know the decision.

Six weeks later, we received news of decision of NHS England. To our delight our appeal had been upheld as the Panel concluded that our relative was eligible for full funding, back-dated to November 2018. We were so relieved and felt that our perseverance was justified.  

Our advice to anyone going through this process is to persevere. Be sure you know the assessment process and the criteria for eligibility inside out. Research is the key. CTBD is great for this. Try and second guess what you might be questioned about and keep your own records of the care your loved one is receiving and any events or changes that occur. It is a long process. You feel like you are banging your head against a brick wall but DON’T GIVE UP!”

For more reading about NHS Continuing Healthcare Funding, visit our Care To Be Different website and spread the word. Tell others about the free resources available to them.

New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…

Knowing Who’s Who in the Continuing Healthcare arena

My Dad Has Dementia – So Will He Automatically Qualify For CHC Funding?

16 useful tips you need to know at the beginning of your CHC journey

Your mum has ‘social’ needs, so she won’t get CHC funding…

NHS Continuing Healthcare FAQs

The 10 Most Outrageous Excuses For Not Having An NHS Continuing Healthcare Assessment

3 Comments

  1. David Nayloe 3 weeks ago

    I have been fighting the NHS and social services for over 8 years now for CHC for my mum. We are awaiting another Local review panel currently. A DST review was carried out in 2016 and the CCG changed a number of the scores via a “quality assurance panel”. They are not allowed to do this under the NHS framework guidelines. it seems they make up the rules as they go along and ignore the framework guideline to suit themselves. Social services simply agree with the NHS assessors, even though they know the CCG`s are fiddling the system. I am working on a retrospective claim and using what I have learned over the last 8 years via Care to be different and Age concern and other peoples experiences. The first retrospective assessment gave a qualifying score but the panel refused our claim. The fight is ongoing and I believe there is a good change of a successful outcome.

  2. Les Doe 4 weeks ago

    We have persevered and been confronted by a brick wall of cherry-picked responses and non-response. A different assessment document produced by the Locality Team was presented by the CCG with no explanation and denying all knowledge@ of our original even though it had been presented to them. We proceeded via a solicitor to act on our behalf and she has been met likewise in her correspondence with the CCG. Three years on, we are not much further forward…..

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