Andrew also owns Care to be Different – the leading resource on practical advice for families arranging care funding through the NHS. We spoke to him about the work of his two organisations – exploring the good, the bad, and the undeniably complex, when it comes to NHS Continuing Healthcare.
What is Care to be Different and what’s the organisation’s mission?
Care to be Different was set up by an individual who fought for, and secured, NHS Continuing Healthcare Funding for both her parents several years ago.
Rather than waste all of the information she had acquired, she set up Care to be Different as a Blog, which then became the most widely respected information resource for Continuing Healthcare (CHC) Funding.
We acquired Care to be Different in 2017, as it complimented the work which we at Farley Dwek were already doing in this area.
Essentially, we are two organisations which specialise in providing support and guidance to people looking into their potential eligibility for NHS Continuing Healthcare.
We are a free-to-access resource, which includes an active Facebook page, allowing users to raise whatever issues they like regarding Continuing Healthcare Funding. This often leads to public discussion.
We also sell a book, via the Care to be Different website, ‘How to Get the NHS to Pay for Care’, which has been very highly praised by Continuing Healthcare practitioners throughout the country, and by people within the NHS. We also have a paperback version of the book, which has also been well received.
What are the key messages of your book?
The book was developed as a self-help guide, so people have a means to access the right information at their fingertips to navigate the process of getting CHC funding.
It is a fairly complex and involved process. Normally people have to start by going to Google – but have no idea what’s reliable and current.
A lot of time was taken writing the book by our predecessor. We then updated it to include further developments which have occurred in the Continuing Healthcare arena over the last few years. People can use the information to help them – whatever stage of the process they might be at.
Does the NHS itself do enough to signpost people towards Continuing Healthcare?
In our experience there are far too many people who have either never heard of CHC funding. Or, if they have heard of it, have no idea what it is or how to navigate the process. It is often dubbed the ‘NHS’ best kept secret’, and I think that is certainly proven by the hundreds of enquiries we receive on a weekly basis.
Does your book help someone increase their chances of qualifying for Continuing Healthcare funding?
I don’t think you can increase your chances of getting funded. It’s about whether or not your needs are at the right level to be justified funding.
Not everyone who goes into long-term care is entitled to funding, nor should they be assessed for it. It’s about identifying when it’s appropriate to request an assessment if one isn’t offered, and whether your relatives are within the threshold.
With regards to GPs not signposting people – we get calls from GPs who don’t understand CHC funding and want information about it to advise patients or even enquiring about their own relatives. So, if GP’s don’t understand it, what hope is there for the general public?
Watch Andrew discuss the advice Care to be Different’s book provides on maximising your chances of being accepted.
When is the right time for someone to apply for Continuing Healthcare funding?
Anybody who is discharged from hospital into long-term care or back home requiring long-term care, should automatically trigger an assessment for CHC.
Often this doesn’t happen automatically, in our experience people are often told there is no point as your relative won’t qualify or you have to be at ‘death’s door’ to qualify. Neither of these statements are true.
We trust the NHS, they do an incredible job and we are not criticising them as a whole, but, when it comes to CHC funding, people shouldn’t always trust what they are told by the NHS.
So if your relative is being discharged from hospital and they are being refused an assessment because they’re told they don’t qualify, most would just accept that at face value. There will be situations where this is true, but they are still entitled to an assessment.
The assessment is a two-stage process, the first stage of the process, the ‘Checklist Assessment’, is effectively a screening tool and doesn’t take very long. If you don’t pass this stage, it’s fair to say that you are probably not eligible.
If you do get through the screening tool, it doesn’t necessarily mean you are eligible, but means the person can progress to the second stage of the assessment, which is much more detailed.
Not everybody should be assessed fully for CHC funding because there just isn’t the time and resource to do that. Each assessment takes several hours, but the checklist stage should be carried out for at least everyone being discharged from hospital.
There are people in care homes, or at home with long-term care, who perhaps didn’t pass an assessment in the past, but they go on to develop needs that should trigger another assessment..
It’s not a now or never thing, it’s a continuum. Therefore if you are assessed for CHC funding when you’re discharged from hospital or when you enter a care home and you don’t qualify, it doesn’t necessarily mean there won’t come a point in the future when you do qualify.
Read more on Continuing Healthcare Funding
Applying for CHC funding is not the easiest of processes. But, it’s well worth it. If you’re deemed eligible, you’ll get your care costs covered in full. Click on an icon below to explore the individual steps:
What role can solicitors like your firm Farley Dwek play in helping people to apply for Continuing Healthcare funding?
Farley Dwek can offer one-to-one support for anybody, at whatever stage of the process they are at. Some people are happy to access information and guidance via our websites ‘Care to be Different’ and ‘Farley Dwek,’ including a free downloadable guide.
But, understandably, other people want their hand held through the whole process, and are happy to turn to experts like us to support them to secure the right outcome.
We work with a wonderful network of CHC nurses, all of whom have many years of experience assessing people for Continuing Healthcare funding, and they are now helping us to support families.
We offer a screening service, which allows us to advise families on whether or not we feel there is justification for challenging a decision not to grant funding. Or maybe somebody’s heard of Continuing Healthcare Funding, but don’t know how to navigate it.
I think, unfortunately, there’s a natural reticence to contact solicitors – people often fear what it might cost them. However, we always offer an initial free discussion, and in appropriate circumstances we offer a no-win-no fee agreement to pursue a case.
This means we only offer it to people who we truly believe there is a likely successful outcome for, as we only get paid if the case succeeds. The family is then assured that if we pursue a case for them and we don’t win, we don’t charge them a penny.
Through Care to be Different, we also offer a nurse advice line service. People can book half-hour slots on the phone or via Zoom with a specialist CHC nurse, who can guide them in the right direction. We can determine whether we can offer any further services and support them through the process at whatever stage they might be at.
Organisations like ours are very useful to both people who just want to access information, and for people who want more one-to-one support.
It sounds like it can be quite an emotionally taxing experience for people…
People come to us in quite a vulnerable state, it’s hard enough thinking about your loved one needing long-term care, without having to think about the potential impact on family inheritance, personal wealth and the sheer cost of financing it all.
It’s not unheard of these days for people to pay £1,000 a week or more for their care, and that money has to come from somewhere.
But we still have to be realistic – because, sadly, the majority of people who go into long-term care won’t qualify for CHC funding.
But, if you don’t qualify for CHC funding, you may still be eligible for social care funding from the Council – is that right?
Yes, but you need to have first spent most of your assets as the means-test threshold is quite low. It’s set at about £23,000 in England.
If you don’t qualify for CHC funding, the NHS team assessing you should still refer you for a care needs assessment by your council. Even though you don’t have health care needs, it may be that you do have social care needs.
In practice, however, this referral doesn’t always necessarily happen, so it’s important to be vigilant to that and request it for yourself if you have to.
But it’s important also to keep in mind that just because you don’t qualify for CHC funding today, it doesn’t necessarily mean that they won’t qualify in six months or a year’s time.
We encourage people not to be despondent if we can’t help at that exact moment. We do get many people contacting us second and third time after care needs change, which means we can help them. It’s really important for people to understand that this is not a now or never thing.
Find out more about local authority funding
Many people fund their care with support from a local authority. It seems complex, but this process is actually quite simple when you break it down. Click on an icon below to find out about each step:
Personal health budgets were introduced in April 2019 for people who qualify for CHC funding. What are they?
If you’re awarded CHC and you’re cared for in your own home, rather than in a care home, you can opt to have the funds by way of personal health budget. This gives you or people who are looking after your funds, much more choice and control over the care they buy and how it’s organised.
What do you think the future looks like for CHC funding?
I can’t see it going away. Certainly, as we have another ageing population and more people are requiring long-term care. As long as the tenet of the NHS remains as it is, which is free at the point of delivery, then I don’t see how it can change or the requirement for it can change.
What I would like to see is less subjectivity in the way the assessment process is conducted. There’s far too much subjectivity in these assessments by the NHS.
In our view, how can it be right for the NHS to be judge, jury and gatekeeper all at the same time? If the NHS assesses you and decides you are not eligible, it doesn’t mean it’s all over. However, they have to put you through an appeal process, which can be tiresome.
We have been very successful in securing funding for those people who are entitled to it, but we often have to put families through months and months of agony, before we get the right outcome. So, in my view, it would be beneficial if there was an independent arbiter that was involved in the assessment in order that fair and legal outcomes were arrived at far sooner.
I’m not saying that’s going to get rid of the need for appeals, but I think there would be a lot less than is currently the case.
You mentioned that there is too much subjectivity at the point of the assessment. What in your opinion does a good assessment look like?
Often families contact us and say the assessor didn’t know their relative’s name, hadn’t read any of the notes and there was no attempt to meet their relative. It’s obvious to us and the families are involved enough and that assessments are not robust enough.
There are many situations where the CCG does perfectly well, but we are only contacted by those who aren’t happy with the assessment.
The person being assessed, their families, and organisations like ours should be closely involved in the whole assessment. People should feel like their opinion matters and that their voice is being heard. And the people actually doing the assessment must take their time and work methodically to make sure that all the dots are joined up.
How can people best prepare for an NHS Continuing Healthcare assessment?
Read as much as you can from reliable sources. Our Care to be Different and Farley Dwek websites and our book are a great starting point for anybody who is thinking of embarking on this.
Doing your own research before contacting us means people can often answer the question in their heart of hearts whether or not they think it’s worth embarking on this before they even pick up the phone.
Having looked at the information and having thought about your own relative’s needs, you will know, or you’ll be pretty sure, whether or not this is worth going forward with.
If you think having read the information, that there is enough to go on, you don’t need to contact us unless you want to. There is enough information, advice and guidance in the book and on our websites to give you what you need.
We always say to families, if you have an opinion about something in relation to your relative’s needs, it has to be evidenced. For example, if you say your mum has challenging behaviour, that’s not enough as a statement.
You have to give references. For example, ‘my mum isn’t eating enough and is losing weight as a result of not having the right nutritional intake.’ Record the actual diet and weight lost and write it down. Keep a diary. Also make sure that care providers, whether at home or in a care home, are keeping proper records.
It all has to be contemporaneous. This is another issue that we often have, and this is no huge criticism to care homes because they do an amazing job, but sadly the daily records which are kept in relation to the care provided to the patient is often lacking.
If you don’t have the contemporaneous written evidence to support the argument by reference to proper records, it’s very difficult to justify the arguments that you want to make.
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