CHC Funding

[Darlingtonian]

After 4 months of waiting, we finally had our care needs assessment and carer’s assessment today. My husband, who has PSP, was unable to engage as he was incoherent and kept falling asleep. The social worker continued with me. I explained in full detail that he was doubly incontinent, probably lacking capacity, mobility was almost zero, incapable of doing personal care and day to day living tasks and relied totally on me 23/7 due to said immobility. She asked about finances and I asked about CHC. She spent 2 minutes on the checklist and said it was unlikely that he would qualify but she would put it forward. Why is it not a given that PSP patients automatically qualify for CHC? What experiences do others have of applying for CHC funding?

[Millidog]

Hi, We have chc funding for my husband so yes you can get it but it does take quite a lot of hard work in understanding the process and in preparing the evidence you need to demonstrate your husband meets the criteria. From what you have written it seems you have had a social care needs assessment by a local authority social worker. The care they mainly look at is deemed social care - washing, dressing feeding etc. This is means tested care and unless your husband has under @ £23250 in assets /income you pay for care. It is highly likely your social worker has limited knowledge or experience of CHC. Whilst there is a social worker involved in the chc assessment process, they will be a trained chc social worker assessor along with an nhs nurse assessor. Many across the health sector dont have knowledge and will typically say " oh you wont get it". CHC is NHS funded care, is fully funded care and awarded when it is proved there is a primary health care need frustratingly not just on an illness diagnosis. Sadly whilst we know a PSP person has many and changing difficulties you have to take the view they don't know that and you have to prove it. There are 2 stages 1. The Checklist where you submit a relatively brief assessment against @ 12 criteria scoring A,B,C and if successful you are then invited to something called a DST where each of these criteria are discussed, you provide evidence against each and an assessment is made to the severity of need. Eg no need low, moderate, high, priority, severe. There are guidelines to determine eligibility eg so many priority etc I forget the detail. There are also 4 other vital considerations Nature, Complexity, Unpredictability, Intensity. In order to have a chance of success I would suggest you get one of your good health professionals on board to help advocate for/ with you, this may be your GP, hospice or parkinsons nurse or even an ot, ideally someone who is familiar with chc. I would also advice you to read up on chc to understand the process and the content. You can find lots of info on the nhs website, on both the Beacon and Care to Be Different websites and importantly if you scroll down to the bottom if this page where your post is open you'll find related posts. You can also use the search bar and you should find quite a number of useful posts about this subject. It does sound like a lot of hard work and yes I'll be honest it is and probably at one of the most difficult and stressful times BUT I can't stress enough ...it is worth it.

[SunriseLegend in reply to Millidog]

Couldn’t have said it better . We got it for my husband - and have survived one review and about to have another . happy to share anything that might be helpful

[TigerDaughter]

Hi , I totally empathise as I too had an assessment 2 days ago. It left me thinking that the funding is going to be determined by a score that the nurse/assessor comes up with. Frightening.Milldog's reply is excellent and clear and instructive. So I will look deeper into it. Thanks Milldog.

[lunarquasar]

Hi I completely agree with everything Millidog has said, if you want anymore information you can read my previous posts as I managed to get CHC for my wife who has CBD. It's tough but worth all the effort don't give up.

[Bergenser]

Millidog’s summary is excellent regarding the process. It’s important the different teams get involved and that there is someone from NHS actively participating in the assessment.

I managed to get CHC for my husband 3 years after his diagnosis. I insisted on a personal health budget so that we could continue with our regular carer (self employed PA) and get additional shifts via a care company. This took so much time that the first time we actually got any help via CHC was when my husband was discharged from hospital to have end-of-life care at home. I will still have to wait to get a refund for around 6 months of self-funded care during the period he was eligible for CHC.. I guess it was worth the effort but it also took a lot of energy at a time where I didn’t have any to spare.

Clearly there are differences in how the criteria in the framework are applied so experiences will differ between the Integrated Care Boards.

My impression, when we went through the assessment, is that complexity and unpredictability carry a lot of weight. It may seem unfair, but very low mobility might score lower than higher mobility. Frequent visits to the toilet, hesitancy and urine retention might score higher than double incontinence. Peg feeding might score lower than risk feeding. High motivation and impulsivity definitely scores higher than apathy. Lower capability and low activity is likely to be interpreted as a social care need. If a regular schedule of short visits - for feeding, washing and positioning - would suffice, it’s likely to be classed as social care.

The summary in our case was along the lines of “if current support (i.e. wife and carer providing 24/7 supervision) were withdrawn, G would be likely to come to harm, requiring urgent medical care”. The fall risk, made worse by impulsivity and poor decision making, seemed to sway it. In other words - needing help in the shower => social care. Trying to climb over the Sara Stedy when wet from the shower => CHC…

I wish you the best and hope you get the support that your husband needs. 🌻

[Harshacceptance]

it seems to be the period of CHC reviews - my dad had his Thursday after a few months of cancellations. He was fast track from May so needed full DST. He is late stage CBD and very poorly - zero mobility, neuropathic pain, high aspiration risk, non healing wounds …

CHC the delimiting factor is nursing needs vs social needs - CHC is NHS funded to support nursing needs.

My partner is a palliative nurse which is a godsend and she gets very frustrated as she has participated in the CHC process for many years (note: we live in a different ICB to my parents) … CBD / PSP are terminal and currently no cure, the nursing needs are complex, it’s unpredictable and the last thing people need is financial worry when their loved one, my dad is in an end stage of life.

It’s a horrible process and I fully understand the complexities as it’s applicable to everyone, however in the case of these horrific diseases, your never going to get better, it’s going to get worse - quoting the palliative consultants letter of support.

I don’t know the outcome however I had the opportunity to advocate for my dad and mum - there was a CHC nurse, social services etc in the meeting.

We put in a lot of work gathering evidence from dad’s entire MDT … I believe it’s imperative that the family or the people who care put this together. We put the DST together as a suggested draft ensuring the focus on dads clinical needs, the cross over with health domains. Thankfully I was allowed to lead the meeting and we used the DST that we had prepared as the basis. For months prior to the meeting and preparation of the DST we contacted all people involved in Dads care, gathered evidence from the GP, requested his medical records, letters from his neurologist, palliative consultant …. We provided copies of the DST, letters etc as part of the meeting and followed up electronically

For every health domain we outlined his current care regime, the clinical risks across all domains …

I created a picture timeline of dad to how he was 5, 4, 3, 2 yrs ago to the last few months .

The PSP website has great info for health professionals - CBD / PSP is rare and the majority of health professionals have never heard of it - I printed copies out and shared at the meeting

It is the CHC assessors responsibility to gather evidence but what was clear was that they didn’t have important letters from consultants, evidence of persistent UTIs.

You must advocate and bring all the evidence together, help the CHC nurse …. It’s a huge amount of work so we took the view to help them make the right decision.

I have created multiple documents that I had prepared to provide counter arguments for nursing needs vs social needs - I will share them to this forum as I would like to help where I can.

Bless everyone going through this horrific disease 🙏

[Rose1sunflower in reply to Harshacceptance]

OK panicking now! My husband was given Fast Track Funding last year. We have a review this Monday!! All this 'Evidence', you talk about I dont have. I've written the family statement, have some notes I've written but dont have his records or letters as most things have come via email and the printer is broken. I have invited the Palliative Care Nurse and Manager of the Carers that see my husband 3 x a day (presently paid from the Fast Track Funding), so please think of us on Monday afternoon and send good vibes!

[Harshacceptance in reply to Rose1sunflower]

That’s incredible to get the palliative nurse along, really they know your husband and will advocate which is so important.

My mum wasn’t asked if she wanted to invite other people in his MDT, I decided I was going to attend …

Ensure you ask about the process, what happens when etc when does it go to panel and ask them for the evidence manuscript as well. Ask them about evidence etc

Fingers crossed …

[Rose1sunflower in reply to Harshacceptance]

Thank you

[Harshacceptance in reply to Rose1sunflower]

sorry for the length below - I created a little document for my own purposes. It’s very dependant on the assessor but I wanted to be fully informed and in a position to counter any areas I didn’t agree with. There are some bits specific to my dad here as he has no healing wounds / catheter however hopefully it makes sense

You don’t need to print it out, it’s good to scan it because it helps to be clear on health needs vs social needs.

Good luck 🙏

CHC Overview

• Primary Health Need: CHC is awarded if an individual’s overall care needs go beyond what local authority (LA) social care can legally provide.

• Four Key Characteristics:

1. Nature: Type/nature of the individual’s needs and care required.

2. Intensity: Quantity and severity of needs, and continuity of care.

3. Complexity: How needs interrelate and increase the skill needed to monitor/treat.

4. Unpredictability: Likelihood of sudden or rapid deterioration and the level of risk if care is not provided immediately.

2. Main Reasons to Support CHC Eligibility

1. Multiple High/Severe Needs: Several domains scored at High or Severe often indicate a level of care beyondtypical social care.

2. Unpredictable, Rapid Deterioration: Conditions like advanced neurodegenerative illness with recurrent infections or frequent flare-ups can be unstable, requiring skilled professional input.

3. Nature & Complexity of Care: If regular interventions (e.g., complex catheter care, non-healing wounds, high aspiration risk) demand continuous nursing or advanced clinical judgment, that suggests a primary health need.

4. Well-Managed Needs Are Still Needs: Under the National Framework, if removing existing nursing/clinical oversight would likely lead to significant deterioration, those needs are still ‘high-level.’

3. Common Assessor Arguments Against CHC (and Counterpoints)

A. “Needs Are Managed/Controlled”

• Argument: Existing interventions (District Nurses, scheduled medication) keep the condition stable; no evidence of severe escalation.

• Counter: The fact that skilled interventions prevent deterioration does not diminish the level of underlying need.

B. “Tasks Are Mostly ‘Social Care’”

• Argument: Activities of daily living (washing, dressing, feeding) do not necessarily require continuous registered nursing.

• Counter: If, for example, wound care, catheter changes, or complex dysphagia management require ongoingclinical judgment, that goes beyond standard social care.

C. “Condition Is Not Rapidly Fluctuating”

• Argument: Despite being end-of-life, the deterioration is steady or predictable; urgent interventions are not frequent.

• Counter: Frequent UTIs, aspiration risk, and palliative needs can quickly escalate. Unpredictability does not always mean daily crises, but the risk of serious harm is ever-present.

D. “Family/Carer Primarily Provides Care”

• Argument: The individual’s spouse or children handle most support, with minimal additional skilled input needed.

• Counter: Heavy reliance on an unwell carer raises the risk of ‘carer breakdown.’ If she becomes incapacitated, specialized nursing support is immediately critical.

E. “All Needs Are Within Legal Limits of LA Care”

• Argument: Tasks (medication reminders, repositioning, toileting) remain within local authority capabilities.

• Counter: If daily skilled nursing assessment or intervention is necessary (e.g., complex wound management, advanced palliative care decisions), it likely exceeds LA remit.

F. “Domain Levels Don’t Warrant CHC”

• Argument: The assessor might ‘downgrade’ domains (e.g., from High to Moderate), concluding the totality doesn’t cross the CHC threshold.

• Counter: Emphasize interdependence among domains and how combined needs create complexity/intensity that a purely social care package cannot safely manage.

G. “Psychological Needs Are Significant, But Not Primary”

• Argument: Anxiety, depression, or emotional distress alone doesn’t mean a primary health need.

• Counter: Psychological/emotional needs can exacerbate physical risks (e.g., refusing medication, increased aspiration risk) and require close clinical oversight as part of palliative care.

4. Tips for Communicating Key Points

• Highlight Interactions: Show how one issue (e.g., non-healing wound) aggravates others (infection risk, mobility, pain).

• Use Evidence: Point to specific events or near-crises (e.g., choking episodes, repeated UTIs requiring rapid intervention).

• Explain Carer Breakdown Risk: Stress the precarious situation if the main carer becomes unwell; this can escalate unmet clinical needs overnight.

• Emphasize Clinical Oversight: If complex tasks need expert monitoring, it indicates health-led, rather than social-led, care.

• Document Thoroughly: Reference letters from specialists, daily care records, risk assessments, and statements from DNs or palliative teams.

5. Preparing for the Meeting

1. Bring the DST (all domains clearly scored and justified).

2. Cross-Reference Evidence: Show how each domain interlinks with others.

3. Anticipate Counterarguments: Use the above points to rebut any suggestion that needs are purely social.

4. Ask for Specifics: If the assessor deems something ‘manageable via LA care,’ request clarity on how the LA would manage advanced clinical tasks.

5. Consider an Advocate: If needed, invite someone experienced with CHC appeals or a specialist nurse to articulate complex needs.

Crib Sheet in a Nutshell:

• Reiterate the Four Key Characteristics every time.

• Well-managed needs are still needs—do not let them be downplayed.

• Carer breakdown is a legitimate concern when the main carer is also unwell.

• If it quacks like a health need, it’s a health need: tasks requiring clinical skill/judgment 24/7 typically surpass social care boundaries.

[Rose1sunflower in reply to Harshacceptance]

Oh my goodness, thank you so much! Really appreciate your taking the time to send me this