What is Continuing Health Care, and who is actually eligible for it?
This blog has been written by Specialist Occupational Therapist, Alex Fisher. In this article she explains:
- What Continuing Health Care is
- Who is eligable
- What is needed for the assessment
Many of you might have seen leaflets or information that says you can get your social care needs met free of charge through the NHS, rather than having to self-fund or contribute via Social Services. This funding system is called Continuing Health Care (CHC).
‘Amazing’ you might think and why wouldn’t you? But a recent report by the Nuffield Trust in which they interviewed families and professionals with multiple conditions called it an ‘adversarial’ process. This means that to get it is a bit of a fight.
I must admit – I take an inward groan when CHC assessment is mentioned in my workplace, but I’ve had to learn to take a different approach. Not easy by any stretch and I’m not the one going through it, but as the process is a bit of a fight, then my approach is to break down what I need to do in chunks and prepare. Although I started out by telling you about my groan, this blog is not going to be a groan fest. Rather, I hope it will be what I’ve learned from incredible colleagues and families about going through the process and what helps.
This is all in time for the Huntington's Disease Association’s theme around advanced planning. To be aware of what might happen and what you might need for something like this can often make it less scary. I’ve tried to write the piece with family and companions in mind. They’re the ones who may have to support the person with Huntington's disease going through this, particularly as that person will have to be quite poorly to meet the criteria and will often not be able to manage it themselves. See? I’ve already begun – this ‘fact’ is already important and reflects the impact of their health on their everyday lives.
What is Continuing Health Care?
It is care funded through the NHS that is based around a person’s health needs. The health bit is important. It’s not just their social needs. There's a difference, although naturally one influences the other.
A nursing colleague once gave me a great example. Think of a baby. You as the parent feed the baby with no difficulties. This in terms of care needs, is a social need. BUT what if the baby requires food in a different way, say, via a tube and the food is prescribed and there’s several health care professionals involved to advise on this? This is a health need. CHC funding comes into play when the health needs become primary. That’s when your health needs outweigh your social needs.
However, Continuing Health Care funding also looks at the complexity of that need. That means the intensity/frequency/nature/unpredictability of the need is considered. So, in the case of the baby – how many people are overseeing the feeding tube, are there regular difficulties such as infection or replacement and does it interact with the baby’s other needs i.e. their skin or behaviour? In Huntington's disease, the health domains (what the assessment for CHC calls them) are often interlinked.
Some myth-busting
Many people think that as soon as you get a diagnosis of Huntington's disease, that’s it – you qualify. Nope! This is based on your needs not your diagnosis. Of course, having a diagnosis does quantify what may be happening to you/your companion (and your/their needs). There are different rules for prognosis and what’s called a fast-track application, but these are too difficult to go into here.
It’s not for the house – i.e. carpet cleaning, it does not cover toilet rolls for caregivers (who may be employed via a CHC agency or your personal health budget). See my next point. It does recognise the family caregiver. Make sure you have a carer's assessment in you’re own right and keep the documentation. This is a source of evidence. Have one yearly. Be honest about the amount of time they are caregiving and what they are doing within that time. For example – are they having to spend countless hours doing laundry or cleaning the toilet due to incontinence? Does the person they support let them out of their sight? A carer's assessment may provide access to some money to help them with this. Enquire via your local authority/council/social services.
The person with Huntington's disease or caregiver/companion does not have to run their own health budget (what is called a personal health budget), they can choose to have a brokerage agency help them.
A CHC application does not have to involve ‘nursing’. I’ve heard the phrase ‘nursing need’ and not ‘health need’ time and time again. Of course, health needs may involve nursing, but they also involve other professionals such as psychiatry, therapies and medics which are ‘health’ needs. Health funding can be provided in the community - so does not have to wait for a person to go into ‘nursing’ care. Funded Nursing Care (FNC) is a different concept and is a top-up for a person in nursing care already. Again, this blog is not about Funded Nursing Care.
If a person with Huntington's disease gets Continuing Health Care funding, you will still have to liaise with your local authority and social services at a future point. This is because CHC is run through the health board (Integrated Care Board (as it is currently known)). Not all needs can be met through health processes. Some ICBs and CHC departments do sit together and have access to social services colleagues within them but not all.
Some downsides
Continuing Health Care does not cover everything – i.e. adaptations, equipment. So, for example, if the person with Huntington's disease needs adaptations to their home, these will need to be arranged through their housing association or social services.
If the person with Huntington's disease is in nursing care and are given CHC funding, it does not mean that they will be provided automatically with specialist equipment. Equipment provision has its own rules. Nursing homes are contracted to take the person’s whole and long-term needs into account when they initially assess them and should provide equipment to manage their needs in a least restrictive and dignified manner. Whilst I have said CHC does not ‘pay’ for equipment, if the need cannot be met through alternatives (reflecting the complexity of the need) – CHC will consider appropriate equipment. Specialist seating is not a personal choice or a luxury – it is clinical and families should not be paying for this.
If the person with Huntington's disease is given CHC funding, it is reviewed after three months and then yearly. It is not allocated forever. Their caregivers will have to continue to keep evidence of need. This frequently catches people out.
Starting out – how to begin
It can be uncomfortable, but do arrange for both a Health and Welfare Lasting Power of Attorney (LPA) as well as a Financial one. A person with Huntington's disease should discuss with a potential attorney what they want. If you become an attorney, make sure you know what the person who nominates you wants. This is about what they would want. If you are in a group of Attorneys, make sure you agree. Discussions can become heated and tensions build. Make sure you know what it involves as if the person you know loses capacity you will be consulted on decisions. If you are not sure what it might involve talk to your Specialist Huntington's Adviser or Huntington's disease team or make an appointment with another organisation such as the Citizens Advice Bureau.
Make sure you are familiar with the Continuing Health Care process – check out Compass. They are employed by the NHS to provide a free initial consultation (usually up to 1.5 hours). Thereafter, there’s a cost, so I’d advise saving your consultation until you’re ready to apply and have questions or have been through the process and maybe having difficulties. In the intervening time – a MUST is to look at their videos and how to guides.
The person with Huntington's disease or caregiver/companion may not like hearing this but have a social care assessment, even if they are aware that they will be asked to self-fund. The local authority has a legal responsibility to assess the person with Huntington's disease's needs and having an assessment show those needs and whether they potentially qualify for above and beyond what they (social services) might be providing. This gives the social worker knowledge of their needs and in some cases, they can advocate for the person with Huntington's and alongside them in the Decision Support Tool meeting. The Decision Support Tool meeting is the meeting where the assessment by the CHC Assessor looks at all the evidence. Different local authorities have different procedures for this involvement.
Some local Huntington's disease services have professionals who will submit the initial checklists to get the CHC process started, some won’t have that resource but will provide reports for evidence. Make sure you know.
If a person cannot consent to the process, someone else will have to submit the checklist and attend the Decision Support Tool on their behalf. This might be the Lasting Power of Attorney, a good enough advocate (social worker or someone who knows them very well) and/or a Mental Capacity Advocate (appointed through social services usually).
Carers assessment – see previous advice.
Take the organisation’s time to deliver into account – health and social care do not work in the same way. If not sure ask. I often write this down as a question when making enquiries so I can make a note of when to follow up and I have to factor in the time it’ll take (to get through).
The turnaround for a CHC Assessment is usually within 28 days however the assessment process can be time-consuming. The Decision Support Tool (DST) meeting can often take up to four hours and is exhausting. Be prepared for this and other additional, time heavy and frustrating telephone calls and administrative processes. Make sure you make sure that the CHC Assessor has all the evidence and all the right contacts details. This sounds basic but it’s surprising how often this goes wrong i.e. appointment letters to the wrong address or to the person with Huntington's disease rather than their Lasting Power of Attorney.
Do familiarise yourself with the paperwork – freely available on gov.uk. You can see the domains (areas of health to be assessed) and the grading systems and phrases used i.e. always or sometimes. These small words make a difference.
As a caregiver/companion, keep a diary of what’s happening (a page a day/or a notebook with tabs works best). Divide it up into the domains of health to be assessed (see my last point). Keep it for three months / or if you can’t bear that at least four weeks prior to the assessment. You can of course write how this makes you feel emotionally and what impact it's having on you but also be objective i.e. what is the frequency of the problem?
What risks does this create for you/the person you know with Huntington's/You NEED to make this invisibility visible when thinking about evidence. Remember how the evidence should demonstrate complexity i.e. cognition affecting behaviour. The best diary I ever saw was colour-coded (with highlighters). The colours matched the domains and if there was a relationship between the diary entry and the domains – the diary keeper marked the page with those colours.
“A well met need is still a need”. Sometimes care is already in place for the affected individual, or they will have received CHC funding and are having to undergo another assessment. If they or the caregivers are keeping evidence, ask what would happen if that care is removed or if something within the care package is done differently. Does this alter the person’s behaviour? How long does it take to support them to settle again. Even if they’ve done everything you can? Remember making the invisible visible. Sometimes we all have tendency to underthink what we are doing to support the person, or we think we are being disrespectful to them. An assessor is not a mind reader. They are often parachuted in with no knowledge of the disease or the person’s situation. It must be made clear to them.
Should the person with Huntington's disease be at the assessment?
The answer is – it depends. I hate giving you that answer but it’s a truism. Whilst the person has Huntington's disease, as you know not everyone with Huntington's disease is the same. If the person can consent and can follow the salient points of the process and tolerate the assessment, then yes, they should be there.
However, if cognitive impairment is such, that they cannot consent and only assent (that is agreeing to be there but not understand and need to leave when they indicate it) – then they might only be there for some of the assessment. Their Lasting Power of Attorney or a Mental Capacity Advocate or good enough advocate (who knows them well) should be present throughout. This is an important observation and evidence which should go towards the assessment i.e. “they cannot consent to the assessment and need a trusted other” should be documented within the cognition section as its clinically valid.
If cognitive impairment is such that they cannot assent and have an inability to tolerate the assessment, then it a cruel and unusual process which would make them take part. See my points above.
Of course – its not just about whether the person with Huntington's disease should be there. Consideration should also be given to whether the caregiver/companion may want them there. The caregiver/companion may not feel comfortable saying things in front of them and this can often cause tension in the household following the assessment. I’ve known people with Huntington's disease to have enough social grace to tolerate an assessment, only to process the experience hours later and become very distressed. The professional who leaves does not have to mop this up. In our Huntington's clinic, we will often see patients and their companions separately if we are aware this might happen and we have the resources to do it – not always possible.
The lack of insight resulting from the disease process requires creative workarounds which CHC assessors and other health and social care professionals find unusual. It’s important that they are made aware and again this should count towards evidence.
What are the Huntington's Disease Association and Health Care Professionals doing to help you?
It’s a practical impossibility for your Specialist Huntington's Adviser to be by your side throughout this process as it depends on their caseloads and geographical area. If you don’t know – it can set up unreasonable expectations so, make sure you do. Huntington's disease care professionals are funded differently and have different resources up and down the country. Make sure you know the level of support they can offer too.
The Huntington's Disease Association is in the process of publishing a Guide to Huntington's disease for Continuing Health Care Assessors. Designed in collaboration with a CHC Lead Nurse and Huntington's Professionals, it is hoped that CHC Assessors can use the guide to better inform their assessments. You might want to look at it too when it's published (approximately May 2026).
Specific issues we have addressed within the guide are (which you might want to think about too): How cognitive impairment in Huntington's disease is very different and how it feeds into all of the domains, living alone with Huntington's, how the disease is a disease of families and how they too should be taken into account, and health affects the social actions of an individual early on in the disease.
The Huntington's Disease Association has already undertaken their first training session with an Integrated Care Board (ICB) in the West Midlands and is rolling out the training to other areas of the country that want to take it up. The initial feedback from the assessors who attended was positive.
Not all assessors are familiar with all conditions and so this project is incredibly important.
Final thoughts
I can’t guarantee that through following this blog, you or your companion will receive Continuing Health Care but it will optimise the possibility. The system like many of our government systems are under strain but in the same breath, I know you are too. I hope these thoughts help a little.
Thank you so much to Alex who has taken the time to write this really useful article for families where there is Huntington's. We hope that some of you may find it useful when trying to understand who is eligible and what evidence is needed for Continuing Health Care.