Getting NHS Continuing Healthcare assessments done - who should you ask?

Published 29/07/2014

Please note: This article was published prior to July 2022, and some information may be outdated.

Getting NHS Continuing Healthcare assessments done is one thing – but first you’ve got to actually get through to the right person…

Joanne in the north west of England wrote to us to highlight the process she had to go through just to speak to someone on the phone in the NHS about getting an NHS Continuing Healthcare Checklist assessment done for her mother.

It’s not unusual for local NHS telephone switchboard personnel not to have heard of the Continuing Healthcare department, and families can find it very frustrating just trying to get put through to the right person.

A further problem is that NHS personnel within health and social care don’t necessarily know who deals with what – and families end up exasperated just trying to make some kind of progress through the phone system!

Joanne continues…

“I called Social Services (local authority) to ask them for the name of my mother’s social worker. I also wanted to know who I’d need to contact to request a Checklist assessment.

I needed to ask this because when I’d originally asked Social Services to intervene in my mother’s care, all they sent us were means testing fact sheets and information on paying for care. I had pointed out to them at the time that such an attempt to get my mother to pay for care was both incorrect and illegal.

The person on the phone said she didn’t know much about Continuing Healthcare, but that her notes said if anyone called about it they had to contact the local Clinical Commissioning Group (CCG). However, she could not give me a contact name.

I called the local CCG to ask who to address my Checklist assessment request to. I was told that the CCG was no longer responsible for Continuing Care assessments. Instead, I would need to contact the Clinical Lead for Continuing Care at a regional Commissioning Support Unit.

The person at the CCG also said that Social Services kept getting it wrong and hadn’t updated their information – and that they hadn’t been responsible for Continuing Healthcare since April 2013.

[Note: CCGs were made directly responsible for NHS Continuing Healthcare in April 2013; prior to that it was the local Primary Care Trust.]

I could see that getting NHS Continuing Healthcare assessments done might not be quite as easy as I’d assumed.

I called and spoke to the Clinical Lead at the regional Commissioning Support Unit, who said it wasn’t her responsibility either.

She said I would need to contact the nursing team at the Complex Cases and Continuing Healthcare (CHC) and Funded Nursing Care (FNC) team. She said that the CCG kept on getting it wrong and sending cases incorrectly to her team rather than the CHC and FNC teams.

So… I called the CHC and FNC team and finally got through to an administrator who said I had come through to the right place and they could arrange an initial Continuing Care Checklist assessment for my mother.

I mentioned to her the number of phone calls I’d had to make just to get through to her and she said, “It is a bit of mine field, isn’t it?”

I am amazed that Social Services think that it’s the CCG in my area, and the CCG think it’s the Commissioning Support Unit that organise the assessments. If I had sent an initial letter to the CCG goodness knows how long it would have taken to finally get through to the right people.

I was determined to keep calling and getting information out of people until I got answers, but it shouldn’t have to be that hard. The most worrying thing is that Social Services here have no idea who is actually responsible for Continuing Care.”

As Joanne has highlighted, getting to the right person in the health and social care system is not always easy, and it doesn’t help that people working within the system don’t always know what’s right and what’s not – or even who’s who. It just makes getting NHS Continuing Healthcare assessments done even more frustrating.

The various Commissioning Support Units around the country can be a point of contact in some instances, but not always as the first port of call, so it can certainly be confusing and frustrating for families trying to navigate all this.

Responsibility for NHS Continuing Healthcare lies with Clinical Commissioning Groups, and the local one is generally the first point of contact within the NHS for families. The Clinical Commissioning Group may have contracted out their Continuing Healthcare assessments, but it’s still a good first step.

Social Services, as part of the local authority, can also put the wheels in motion to get a Checklist assessment done – as can a care home, GP or district nurse, assuming they actually know about it.

The 7 most outrageous reasons for not receiving an NHS Continuing Care assessment

What problems have you had getting through to the right people in NHS Continuing Healthcare?

Tagged Categories: CHC essentials, CHC funding, Checklists and assessments, Getting assessed, NHS Continuing Healthcare

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22 Comments

carole whalley November 25, 2014 at 11:51 pm

My mum in law went into hospital on the 9th of september she was in for6 weeks the hospital said she needed to go into a rest home we found her a rest home near were we live she was happy and we was happy with the care she recieved she went back in hospital 10 days ago and now the hospital are saying she needs a nursing home we can not find one near us she wants to go back to the rest home and we want her to go back and the home said they are happy to take her back can anybody tell me if the hospital can force us to find a nursing home

Angela December 2, 2014 at 1:32 pm

Thanks for your comment, Carole. The most important thing is safe care, of course, and if that is in a nursing home, then that may be what you have to do. However, it's worth delving deeper to find out why exactly a nursing home is being recommended; if the various people involved can pinpoint all the specific nursing needs, then this could be useful evidence to support a case for CHC funding. Either way, be sure to get the CHC assessment carried out before you pay any care fees.

Angela December 2, 2014 at 1:28 pm

Thanks for your comment, Andrea. Sadly it's not unusual for families to be given incorrect information about CHC (such as the '6 weeks from dying' comment you were told) and told 'not to bother'. It leads to basic funding mistakes being made for so many families right at the start. Wishing you ongoing determination to see it through for your dad.

Chris-G November 28, 2014 at 11:18 pm

Hi Carole,

Has the NHS done a CHC assessment? Have they insisted on the need for Nursing Care? If your loved one needs nursing care immediately upon release from hospital I would argue that the NHS should be paying for it. And no the NHS cannot decide which home you relative must go into unless of course they want to pay for what might be some form of extended NHS care or NHS interim care. That would normally only be considered to be temporary. If the NHS is trying to get your loved one out of the hospital then insist on a CHC assessment before discharge. Also, without a CHC assessment, the NHS cannot pay the much lower sum of Funded Nursing Care Component in it's place, until the CHC assessment has adjudged a patient to not need CHC funding.

Andrea Clargo November 24, 2014 at 12:18 pm

Having first experienced the assessment checklist 2 years ago when my dad was in a local hospital, and I was told to "sign this" with no explanation as to the contents, I am now getting more clued up but there seems to be a conspiracy going on. I spoke to my dad's GP surgery, the receptionist told me it would be referred to the CCG, but then the next day the GP rang to say this had not happened and I should ring Social Services. Then I had an unsolicited phone call from my dad's district nurse telling me not to bother applying as he could only get it if he was 6 weeks from dying (better get my crystal ball out then!). When I mentioned it to the care home they told me not to bother. I am persevering and am currently in correspondence with the CCG. I am determined to see this through.

Chris-G November 28, 2014 at 11:10 pm

Hi Andrea, Your conspiracy comment.......
Simple economics:
Nursing Home Self funded circa £940-1060 per week
Ditto NHS funded circa £650-700 per week
Ditto Council funded £540 per week
Ditto Ditto + Nursing £110 extra per week

These are all close approximations of the charges at one nursing home that I deal with.
The last two examples of course, include recharging the patient by the council, according to their financial means.

I have seen a nursing home manager look up a resident's address and others like it on the internet and discuss the probability of substantial pension/savings and the house values whilst comparing the house with others that were recently sold. This was done with a council adult care manager and a CHC nurse all in chatting, laughing and drinking coffee in the same office. (door open).

I genuinely believe that there is a one for me one for you calculation going on according to the best financial outcome for the three organisations involved and not the patient. That of course is an opinion and might be untrue but it is at least based upon some observation of a financial discussion of a patient's resources that involved two official parties that had no right to know at any stage and should not have been taking place. Three officials would have wrongly discussed a patient's finances if the patient (unknown to me), had not at that time been assessed for NHS CHC funding.

To put it in context. When was anyone's family member questioned as to their full financial circumstances upon going to the Doctor or a Hospital for NHS healthcare?

Chris-G November 8, 2014 at 6:34 pm

This is similarly repeated elsewhere on the site. I have recently been told by a Director of my CCG to ask the care home for an assessment. The Hospital having failed to carry even one out, prior to a series of three surgical discharges. It seems that even the NHS's bosses don't know what to do and who to ask to do it!

Anne Whittaker August 20, 2014 at 4:48 pm

Following a 9 month wait after the initial checklist by the social worker, we've recently been through a three hour full assessment for my mother who has MS, is doubly incontinent, unable to move at all, and has memory problems. At the meeting, where each area was scored, my mother was assessed as having high needs in 3 areas, with medium needs in a further 4, which we felt should qualify her for Continuing Care. The nurse appointed by the NHS and the social worker then had a short meeting to discuss the case but we were advised they were unable to agree! Hardly surprising when they're both defending their own budgets! We were then told that the case would have to go before a panel for them to make a decision, but that the scores that had been made wouldn't form part of the decision, it would be judged on whether mum's needs were acute and unpredictable! In our opinion they are, however, we questioned at the time why the scores were irrelevant if that was part of the assessment process, but we were just dismissed saying that wasn't how it worked! We feel like we've just wasted three hours of our lives sitting through an assessment that was never going to be taken into account.
In addition to that, mum's key worker and the Nursing Home manager told my mum that if the application was approved, then they would have to move her to the Nursing wing of the Home, which of course mum didn't want to do and leave her friends behind!
We've now had a letter back from the panel advising that we've been declined the funding, surprise surprise, but we're just debating whether it's worth appealing when clearly they're not interested in doing the right thing!

Chris Gallagher August 25, 2014 at 7:13 pm

Disgusting and so wrong for so many legitimate reasons

Angela August 22, 2014 at 11:15 am

Thanks for highlighting your case, Anne. Sounds very frustrating. Just a note about having to move your mum if she has Continuing Healthcare funding - The funding is available no matter what the care setting is, i.e. it doesn't have to be in a nursing unit or nursing home. If the care home are saying they need to move her to the nursing wing, this should ordinarily be because her needs are such that she needs to be there - not because she has a certain type of funding. The funding does not dictate where a person has to be cared for. I wish you well with the appeal, should you decide to pursue it.

Angela August 16, 2014 at 5:20 pm

That doesn't sound right at all, Karen. From what you've described they should now be holding an MDT meeting and completing a Decision Support Tool. Also, if the NHS did not properly address your previous dispute about the very first Checklist, then you may still be able to pursue a retrospective claim. Obviously I don't know the details of your case, but the information you've been given about the NHS delaying the full review at the moment just seems like an attempt on their part to avoid carrying our their duties as assessors.

Karen Birchall August 15, 2014 at 9:53 am

I have been trying to get beyond the initial checklist for my mum for 6months now and just go round in circles. My mum wasn't assessed for CHC until 9months after going into care (after I queried why it had t been done) and I disagreed with that assessment (that was over 3 years ago), the latest checklist in Feb this year came after numerous requests by me and finally came via the CCG. She scored 3 C's, 5 B's and 3 A's, this I assumed would automatically lead to DST... But no, CCG informed me "a full review should take place within 28 days of identification of a review being required, but on occasion it transpires further assessment of their needs to ensure that appropriate care is being provided. If this occurs then the time constraint ceases and the outcome of the assessment is awaited pending a further checklist"... my mother apparently falls into this category and as I say, 6 months on and I am "still" waiting. I am appalled and disgusted by the whole system.

Angela August 10, 2014 at 4:26 pm

Thanks for your comment, Paula. The type of care home your mother is in is entirely irrelevant in terms of Continuing Healthcare funding, i.e. she doesn't have to be moved to a nursing home. What you've been told sounds like bullying on the part of the assessors (at the very least), and it's quite wrong of them to do this. They will almost certainly want you to drop your application, so that there's no risk they might have to pay, but your mother has every right to be properly assessed and stay where she is.

Trish Westrop August 20, 2014 at 12:22 pm

I am not sure how you even start this process when the social worker, doctor and care home manager have never heard of it. This is selective deafness. My mum in law had to go into a care home because of severe dementia; she would not eat unless she was promoted to do so and has double incontinence last September and the law may say they should be assessed but social services only interested in whether she had over £23000! On admission to the nursing home she scored 0 on a memory test by a consultant!

Paula August 18, 2014 at 6:28 am

Thank you for your earlier response. Yes that's exactly how I feel - bullied - and it hasn't got any better. The Nurse Assessor is now saying that she will not provide me with any written documentation prior to the MDT meeting and I should obtain my own information. Indeed she has said she will only be asking mum's GP for a summary. I appreciate she can only see and assess mum 'on the day' as she has had no involvement previously but how can she carry out a retrospective assessment dating back to 2006 without records?

Also, I understood the MD 'team' should be made up of people 'involved in her care'. The Nurse Assessor has chosen a social worker who will never have had any dealings with mum. The psychiatric social worker involved in mum's care in 2005/06 seems to have retired and no-one has been near for the last 8 years. (I am assuming that the District Nurse invited to the meeting will at least have had some dealings with mum!).

Paula August 8, 2014 at 10:15 am

My mother has dementia and has been on a residential home for 8 years, all paid from her savings and house sale. Prior to going into the residential home, she was in the psychiatric ward of the local hospital who would not discharge her to go home EXCEPT to a care home. No assessment was carried out then. It has taken two years to reach the checklist stage but we are being told we will have to move mum to a 'nursing' home. She has dementia, double incontinence, is unable to walk, talk, feed or do anything else for herself. I asked for an example of the sort of 'nursing' they mean and nothing mentioned applies to mum. Mum is 'happy' as far as we can tell and is well cared for where she is and we do not wish to move her. At the checklist stage we were told that if we withdrew our claim there would be no need to move mum! I think this contradicts everything I have read and clearly they would be ignoring their duty of care if they dropped everything even though mum has got through the checklist stage to full assessment. Any advice would be helpful. Thanks.

Angela August 5, 2014 at 8:43 am

Thanks for your comment, Medeline. It sounds as though the local authority should have stepped in if your partner's uncle has depleted his own funds. You should not be asked to pay for his care yourselves. When he first needed full time care he should have been assessed for NHS funding, but it sounds as though this didn't happen. This article may help: http://caretobedifferent.co.uk/care-fees-means-testing/ You may find this article of interest, too - although as the accident was some time ago now it may or may not be relevant right now: http://caretobedifferent.co.uk/protect-compensation-payments-from-care-fees/

Madeline August 11, 2014 at 10:18 pm

Thank you for your reply. I have spoken to our local authority and the district nurses who provide care every two days for incontinence. Also the physio team. I am in the process of arranging a meeting to have the assessment done. No one seems to want to help and are eager to pass the book on to other organisations. I was told there is no urgency and that they have a big work load. I work for the same SYSTEM that has failed my uncle, I feel ashamed to be part of that SYSTEM now after reading everything I have. I will keep you updated and possibly need your support. I have all your details Angela and will be in touch. Thank you for inspiring us to go forward and fight for what we think has been an injustice.

Madeline August 2, 2014 at 10:45 am

Please can you tell me if my partners uncle is entitled to some help. He was in a car accident over 20 years ago and was awarded compensation. He is wheelchair bound and paralysed. He has many health conditions. He has paid for all his 24 hr care. He is incontinent and suffers with bed sores and ulcers. He has to be turned frequently through the night. His finances are nearly none existent, we as a family are worried about how he or us are going to pay for his care. Please, any advice will be helpful x

Paul Bettridge July 30, 2014 at 6:38 pm

I have been looking after a gentleman for 6yrs. He is 90. I contacted soc.ser. because he needed more care than i can give and breakfast,dinner,tea-time and evening calls were added. It got to the stage where that was not enough. toileting,bad legs needed constant dressing(ulcers} 2nd grade bottom sores, unable to prepare food ,wash,shave ect and he has dementia. I was going away for 18 days so contacted soc.ser. and they found respite care for 4wks @ £1500 with the reasoning to maybe stay there. If he stays there soc.ser. told me they stop all payments and fees will be £43000 per yr. He won't get cont. health care i was told before any assessment has been done. He has his own house value £130,000 thats why. At £43000 a year that money wont last long. Cont. health care seems to be a no no right from the beginning. He has to be practically dead for that I was told.

Angela July 31, 2014 at 12:50 pm

Thanks for your comment, Paul. Many families are told the same thing - and it so often leads to care fees being incorrectly paid by the person in care. Health and social care assessors are very quick to jump on the fact that someone has a house - and yet that must remain strictly a secondary consideration; it should only be take into account if someone is clearly shown not to be an NHS responsibility. In my view it's a cynical attempt by the authorities to get their hands on personal assets. Many health and social care people also don't understand the guidelines they're supposed to be working to, not do they understand the law. What you'e been told in this gentleman's case is quite wrong.