PSP Association
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Refused CHC?

Hi folks

I've had a slight relapse and have started reading up on CHC again. ;)

I keep hearing about cases where people are refused CHC when they are dealing with really quite demanding care.

Is it worth appealing?

caretobedifferent.co.uk/app...

I would strongly recommend that anyone considering an appeal should get proper legal support from an experienced CHC legal or quasi legal team. It appears that there are many 'tactics' used by CCGs to fight their case and a team which is not experienced in this area is at a great disadvantage.

These are the timescales and steps of appeal.

caretobedifferent.co.uk/nhs...

Whereas the Decision Support Tool (DST) tries to bring some objectivity into the process there is still a lot of subjectivity in the decisions.

"Completion of the tool should result in an overall picture of the individual’s needs that captures their nature, and their complexity, intensity and/or unpredictability – and thus the quality and/or quantity (including continuity) of care required to meet the individual’s needs. " And it is often the assessors views of intensity and/or unpredictability which are crucial.

Here are some of the incorrect things often said to carers which should be watched for:

caretobedifferent.co.uk/17-...

Legal Support - Care to Be Different (A specialist CHC website) recommend:

caretobedifferent.co.uk/nhs...

However Beacon (NHS) are very good and they give a free hour of telephone consultation too (Endorsed by Age UK):

beaconchc.co.uk/

Best to all

Kevin

33 Replies
oldestnewest

I've been waiting since September to get paperwork from MdT meeting so can't appeal as got nothing to approach against. They have until 27th of this month to get it to me after I put in formal complaint....I'm not holding my breath that I will get anything from CCg. Social worker tells me it is now joint funded by CCg so no we haven't got full CHC award.

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Hi Spiralsparkle

Write a short letter to the manager saying that you are appealing their decision and require all documentation regarding the assessment and decision before submitting the reasons. This gets you in on time for your appeal and stops the clock.

If you get no timely response from the manager re. documents write to the Chair of the CCG.

Good luck

Kevin

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I will do that if they don't send me anything by 27th. I don't know if we have a case or not but Mum has deteriorated alot in this time period so it needs a review anyway!

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Great - as long as you get a letter in saying you are appealing before the six months is up.

Good luck.

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Oh 6 months was up beginning of March but I wrote end of February asking for the decisions paperwork and gave them a month to reply. Crafty so and so if they have done that on purpose not to send it in 6 months.

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You've still got a case as they failed to send you the paperwork.

"The ‘National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care’ gives clear guidelines to all CCGs and local authorities on the timescales that should be followed. It makes clear that the time between the checklist being received by the CCG and a continuing healthcare funding decision being made should not exceed 28 days"

And they must reply in writing.

They're all overwhelmed with work - short staffed and struggling - Which means we must push them.

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They replied to social team just not us! Will get letter ready to send on 27th asking again as I really do not expect them to reply.

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Yup, they must reply to you. The Social Services (?) don't count.

You might also ask Social Services for a copy of their assessment as well as their recommendations to the CHC panel. Social Services have to give an evidenced opinion as to whether or not the care is within their 'legal limit'. The legal limit is the point where the amount of clinical care needed is beyond their legal limit to provide a service. If they have said it is beyond the limit then they cannot by law provide a service. Things break down and rules are ignored.

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I don't think they submitted anything as such as. They attended the MDt but I didn't see them hand over anything to the CCG woman. The social worker just agreed with what the CCG nurse said really

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The CCG is required to get that decision from the Social Worker. There are so many corners being cut, but the law still applies. If you have the decision from the Soc. Serv/. that it is outwith their legal limit then by default you get CHC.

I've been thinking the current application aside six months have gone by and if your Mum has deteriorated you could ask for another DST. You are well withing your rights on that.

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Yes think will need to. As for social services I've no idea what their view is on legal limit. This is all so complicated and not want people need to be battling.

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Said it before and I’ll say it again, your simply amazing Kevin! Thank you! X

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Aww Amanda

😳😳😳

XX

:)

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What a great contributor you are Kevin!

Thank you 😊

Anne G

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Blushing

Thanks

:)

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Kevin you are so clever, always there for us all, thank you Kevin so lovely meeting you on Tuesday, hopefully see you in June for our beautiful Amanda’s birthday xxxxxx

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You are too kind!

It was great meeting you too.

Oh, yes. I wouldn't miss it for anything.

XXX

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Thank you so much in middle of application currently so very topical for me. Really appreciate all this ammunition ready and braced to do battle if my husband is refused.

Hope you are better

Love

Tippy xx

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Hi Tippy

I'm so glad its helpful.

It's a total heart sink when we are refused.

Yes, I'm on antibiotics now and mending rapidly.

Best of luck with the CHC.

Warmly

Kevin

xx

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Thank you so much for sharing this Kevin_1.

We have been refused CHC twice for my dad and we were told at least 10 of the 17 untruths both times.

We had the same CHC assessor both times and felt that he made his decision before the meeting even started. He holds that he wasnt responsible for the decision thay it was social worker and nursing staff at the home who made the decision - we found this hard to believe. If that was the case, wheat was the purpose in him being there we wonder?

We are awaiting a new dst to trigger another review and are hoping to get a different assessor as it is a different ccg dealing with my dad now.

Thanks

Hayley

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Hi Haley

I am trying not to be shocked at what the assessor did. There should be someone present from Social Services and from the CCG. They should go through each part of the DST in turn and discuss the scoring at the end of each section.

Don't wait for anything to trigger a DST - request one and tell them that his conditioned has worsened. Change of condition is sufficient to warrant another assessment.

Do come back if you need info.

Best to you

Kevin

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We were told that we couldn't request a review it has to come from social worker or nursing staff.

This whole process is designed to put you off and stifle you at ever step!

Thanks so much for your response - it's good to know there are people who do care and are willing to help x

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Hi Martha

Sightly grey area - but I think they are putting impediments in the way.

Sorry to throw so much at you:

From their own manual:

"Identifying potentially eligible patients/service users

4.2 Whilst there are many situations where it is not necessary to consider eligibility for NHS CHC, Standing Rules require CCGs to take reasonable steps to ensure that

individuals are assessed for NHS CHC in all cases where it appears to them that

there may be a need for such care. Therefore, unless it is clearly evident that the

individual does not have a need for such care, health and social care staff should

always consider using the Checklist:-

• At health or social care assessments and/or reviews where the individual has

significant health needs

• Before any NHS-funded Nursing Care assessment (FNC), and at each FNC

review

• Whenever an individual is placed in a care home

• When an individual is to be discharged from hospital (acute, community or mental

health) and requires an ongoing placement or substantial package of care

• Whenever it appears that an individual may potentially be in need of NHS CHC."

And

"4.14 If the individual does not cross the Checklist threshold they should be told that they can ask for the CCG to review this decision. If they are to be placed in a care home

with nursing they should have an assessment for NHS-funded nursing care."

And

4.16 If a Checklist has been completed properly and indicates that the individual does not

require full consideration of NHS CHC the individual can request a review of this

decision. However, once the CCG has fully re-considered the situation, possibly by

completing a further Checklist or full CHC assessment, then this will not normally be

repeated again unless there is evidence of significant change in need. There is no

formal requirement for the CCG to review negative Checklists, although if the individual is in receipt of FNC the need for a full assessment for NHS CHC will be

considered at each FNC review."

england.nhs.uk/wp-content/u...

If you telephone them and tell them what precisely has changed and ask for a nurse to come out they should come out. Make a list and make it worst case scenario.

The other thing you could do is go through any nurse or social worker you have.

It is so exhausting isn't it!

Do come back if you think I can be of more help.

Best to You.

Kevin

x

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Thanks yet again Kevin, Ben has never had the three month review, I expect they will spring that on me soon as it's well over six months since he was awarded CHC funding. I'm really paranoid that the funding will be taken away due to the proposed cuts to social care, the sneaky b!!!!!!!!!!rs seem to be trying their hardest to avoid payment. They must be a very hard faced bunch of folk, employed for their ability not to care a jot. It truly makes my blood boil just thinking about them, it is a very intimidating process and you feel they are just waiting to trip you up to say the wrong thing and bingo they have achieved what they set out to do. Maybe a bit cynical but it is how you feel as you are interviewed, I was totally surprised when I got the call the next day to say Ben was to be awarded the funding but that was last time, it seems anything could happen the next time.

Thanks again Kevin.

Love Kate

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Hi Kate

It does make me quite angry. I know the more vulnerable and more accepting folk will just accept it without a fight. It should not be like this.

Keep your head down - we never have had the three monthly reviews. They are too busy trying to manage applications and one year reviews and the anual reviews can slip a bit too.

Warmly

Kevin

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Hope they slip for several years just to keep us covered, you just never know how long this disease will take before the inevitable happens, Sh!!!!!!!y isn't it!

Love Kate xxxx

By the way it's lovely to be responding to someone you have met, strange isn't it!

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Chuckles - yes it is good.

:)

Warmly

Kevin

XXX

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CHC !!**## .... I want this written on MY death certificate - I think all the stress they have caused will be the death of me while this b****y PSP is killing my husband.

How do these `CHC teams` sleep at night ? I always thought that the medical profession was a caring one. If it wasn`t for people like you Kevin, I would have lost faith in it altogether.

xx

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Thanks NanB

I so agree too.

The number of times I used to have to force the anxiety from my mind... The struggling in a fog of no communication and non of the legally required responses from them. Caring is hard enough without that stress on top.

We go through it all again in May.

Hugs to you

Kevin

xx

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Hello again Kevin. I appealed after an assessment in May, 2017, which gave us nursing care only, then they took it away a month later before we received any of it.

Their reason- that I was doing the nursing care. ( I made the mistake of listing all the things I had to do, including medicating, sorting meds, arranging appointments, applying creams, taking temps, feeding, as you know, the list goes on... ). Their reason for withdrawing it was that I was doing it all so B had no nursing needs. I asked for this reason in writing , but they only told me verbally by phone, no letter followed.

My son, a journalist (!! ) , made a complaint against them and they finally reassessed B in September. They said that they were withdrawing the nursing care award, ( that didn't exist) ,to replace it with CHC. We never got anything towards nursing as it had been withdrawn a month after it was awarded.

The person responsible for sorting the complaint made by my son, said that she was pushing for Q5 as we had been badly treated. With this for three weeks and CHC awarded after that, B had support for 11 weeks before he died. Sadly, his needs were so great and he needed monitored pain relief, that he went into a nursing home at this stage. I still had to pay over £200 per week to the nursing home, but it was worth it as the nursing was excellent. He died 19th January 2018.

I got a call the other day asking if my appeal still stood, as , ( she said twice), our care company had indicated that I might not want to proceed as my husband had died.( The care company told me no such thing, just that CHC had asked for B's notes and did I give consent for this?)

I am going ahead with the appeal . Their callous behaviour made my husband's PSP journey more difficult and made me ill, leaving me with stress eczema which broke out after their unbelievable phone call saying B didn't need nursing care as I was doing it.

Really, I don't want to drag everything up again, but if my appeal makes them think twice about putting people through what we went through, it will be worth it!

Good luck everyone with the fight! Rx

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Good for you Robbo1

Do push that complaint high and refuse any apology until it has got to the top. If you have the will to do that.

I don't know what Q5 is - Is this the CCG internal complaints procedure?

You must have had a rough time of it all.

Good luck with the appeal. It sounds like they are in chaos.

Warmly

Kevin

xx

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Hi Kevin I'm new to this forum and been reading your advice which has got my attention. It's extremely concerning to learn just how many people are experiencing that tactics of CHC and sadly we're amongst them.

My mom had an initial assessment in early April after suffering a severe stroke which took the right had side of her body, affected cognition, speech and swallowing function which has now improved thankfully. She is completely reliant on care for all her needs and at the time I'd assessment was peg fed. Nurse assessor declined her funding stating she has no complex needs no unpredictable needs and her condition is well managed! The social worker did not participate in the assessment at all other than to agree to the nursing assessor on scoring. The final score resulted in mom having the majority of her needs assessed as high and medium . They said she only qualified for funded nursing care! The decision was made by the assessor at the meeting so never went to panel! We are now at local appeal stage and have been refused to record the meeting other than some notes that they would take. Yesterday on arrival at the meeting the nursing assessor who was chairing the meeting blatantly refused to allow for our family advocate to attend the appeal as he was already involved in a CHC appeal. She was visibly agitated and aggressive at him being there and gave us an ultimatum that for the meeting to go ahead he had to leave. We were given 7 minutes to make our decision. Obviously we did not feel it to be in mom best interests to proceed and the meeting was cancelled. The care home provider advised that unless we sign the DPS to secure funding mom would be served notice! We are now considering making a formal complaint and are left feeling completely bullied and deflated!

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Hello Sudabera

I'm so sorry to hear about your Mother. I do hope she regains more functioning over time.

You sound like you have a good grasp of the CHC process and yes shortage of funds is forcing the CCGs' to push the regulations even beyond the limits of the original intention.

For the want of saying it: If there was no social worker present then the CHC process was unlawful. Having said that some CCGs are relying on social services assessments which were done in a separate interview, which though unlawful, is better than none at all.

And, yes the regulations surrounding CHC and appeals are very lax with many omissions. I expect this is because it is considered that the NHS will always want to do the best for their patients. But those days went with the new Social Care Act and the the NHS being deliberately forced to adopt business models with executives from the business world.

I expect you are very aware of the unlawfulness of the issues you point out . So it's not so very helpful for me to repeat that. Instead I would point to two paths you might follow now:

1 Ask the Social Services to come and do a needs assessment and in particular to assess whether the care needed falls within their legal limit. The social services have a limit of complexity of care they are not allowed to exceed. In essence this is the boundary between the care they provide and the care the NHS provides. If they declare the level to be beyond their limit than they are obliged to inform the CCG who are then obliged to provide CHC. If the social services have already done an assessment then ask for a copy and see what that decision was. You have a legal right to a copy of their report. Many people have gained CHC funding through this route.

2 Consider going to the next level of appeal. This is independent of the local CCG. Find a solicitor who specialises in CHC. Google it. I would look for one who has qualified nurses capable of conducting a CHC 'assessment'. I would guess from your post that you may have come unstuck on the 'Nature, Intensity, Complexity' Part of the assessment. Which is really quite subjective. I have quoted the guidelines for this at the end.

I hope this helps a little. Do come back with any questions.

Good luck

Kevin

"Recommendation of the multidisciplinary team filling in the DST

Please give a recommendation on the next page as to whether or not the individual is eligible for NHS continuing healthcare. This should take into account the range and levels of need recorded in the Decision Support Tool and what this tells you about whether the individual has a primary health need. Any disagreement on levels used or areas where needs have been counted against more than one domain should be highlighted here. Reaching a recommendation on whether the individual’s primary needs are health needs should include consideration of:

• Nature: This describes the particular characteristics of an individual’s needs (which can include physical, mental health, or psychological needs), and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.

• Intensity: This relates to both the extent (‘quantity’) and severity (degree) of the needs and the support required to meet them, including the need for sustained/ongoing care (‘continuity’).

• Complexity: This is concerned with how the needs present and interact to increase the skill needed to monitor the symptoms, treat the condition(s) and/or manage the care. This can arise with a single condition or can also include the presence of multiple conditions or the interactions between two or more conditions.

• Unpredictability: This describes the degree to which needs fluctuate, creating challenges in managing them. It also relates to the level of risk to the person’s health if adequate and timely care is not provided. Someone with an unpredictable healthcare need is likely to have either a fluctuating, or unstable or rapidly deteriorating condition.

Each of these characteristics may, in combination or alone, demonstrate a primary health need, because of the quality and/or quantity of care required to meet the individual’s needs.

Also please indicate whether needs are expected to change (in terms of deterioration or improvement) before the case is next reviewed. If so, please state why and what needs you think will be different and therefore whether you are recommending that eligibility should be agreed now or that an early review date should be set.

Where there is no eligibility for NHS continuing healthcare and the assessment and care plan, as agreed with the individual, indicates the need for support in a care home setting, the team should indicate whether there is the need for registered nursing care in the care home, giving a clear rationale based on the evidence above."

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