5 things to avoid in NHS Continuing Healthcare assessments

My mother is being fast tracked for nursing home care this week and I am next of kin and we have to be assessed . She has savings over £23000 and that is her only amount of money as she has no property or assets as such. She wants myself and brother to have her money divided between us but do we have to pay for her care . She has been diagnosed Lung and liver cancer 1 month ago at age of 92 and terminal prognosis and on morphine.

Hi My Father has just been refused NHS continuing healthcare funding. He scored (1) s. (2) high. (5) moderate.(1) severe.(1) low and (1) Neg.
I have now had contact with the social worker who was dealing with my Father and he said after reading the decision, strongly advises me to appeal as he feels it was wrong.
My question is, how difficult is this to do, is it simply writing an appeal and then having the Multi-Disciplinary Team meeting again? Any advice would be gratefully received.

My mother has Alzheimers. My father could no longer cope and she was put into respite. She got a chest infection there and was in hospital for 5 weeks. Before being discharged she was assessed for continuing health care. We attended this with social worker, discharge manager and social worker. We were told she got it and she was sent a few days later to a nursing home which we did see in advance. A week later they want to reassess her. Our fears are that they will now say she cannot get the funding despite the fact that she is as poorly as she was in hospital. I rang today and asked for the assessment to be deferred until after Christmas - they refused. It will happen on Monday. We await the decision. Good tips from the website - thank you

My partner has had CHC funding since being in hospital and being unable to return home just under 18 months ago. He recently had a review and now requires a full assessment, presumably with a view to stopping the funding. The CHC team have told me the assessment date will be on 23rd Dec (although initially planned for 24th Dec), and I have informed them that day is really difficult and as its' vital I attend, could they re-arrange for an alternative date. They insist on that date with or without me, can they do this?

My late Mother-in-law had an assessment for continuing health care funding in 2009 , the Matron who wrote the assessment quoted in the Families presence my Mother -in- Law was a boarder line case?? needless to say was not granted full funding? in Feb 2014 this year ,Winifred was admitted into hospital and was told she was beyond 'LIFE 'it self and was then put on a pathway to her Death.. was straight away fast tracked for full funding she lived 3 weeks to which she became slowly weaker without food and very little fluids and died .... l rest my case.

In reply to Sylvia,

We were very recently and also Oct last year told that we were no longer required to sign the DST. No surprise then that under a Data Protection Act Subject access request, that I got five copies of the same DST sent and one denied because it could not be printed out. What I don't understand is how there are also five sets of the minutes that were typed into a laptop at the assessment. Surely it take one go to correct the grammar and spelling?

All the best.

Facing a CHC assessment! Fat hope for fully funded care in our own home as the only option. Enforced residence in paid accommodation has already seen serious acceleration of distress. Witnessing behaviour of fellow 'detainees' and experiencing variable quality of empathy and care! I am the odd one out, confronted by so called 'experts'. Joined at the hip for sixty years, separation is the ultimate abuse of a loving and stable relationship, caring for each other in sickness and in health.

October 01, 2014
Chris G wrote...
Very familiar particularly with the attempts (in our case) to shout us down at meetings.
If your husband is still at home I wonder if you have the strength to go public with this. Perhaps involve the TV news if you can. You sound angry enough and anger (when controlled) is an excellent source of motivation.
Good luck with it all.

Some comments were accidentally deleted (apologies) - but we've reposted them here:

September 29, 2014
Sylvia Rushbrooke wrote…

I was coerced into signing the hand written assessment on the assurance it was completed. It was not. It was changed and added to. They are not allowed to do this and we are still fighting this 8 months later. The page you sign even says it must not be changed or added to.
My signature pages were used on the amended assessment without my permission even after I asked for them to be destroyed because of this fraudulent use. Still no resolution.
They never gave us a copy of the hand written assessment as agreed, and now 8 months later have admitted it does not exist any longer but the signature pages were kept.
On the page that requests the person’s needs there was nothing except statements.
We were not allowed to complete the section for carers and family at the time of it being written/signed.
We were not allowed to include emotional and cultural needs.
We were told the missing information that we wrote would be added as an appendix; it was not.
We were told we would have the right to correct any incorrect information; this was never corrected.
Many statements were made with no context, misleading any reader, ie they stated our mother was verbally abusive – and they used the example that she used the word bloody, and clearly did not understand this is an English expletive and not verbal abuse.
They said our mum was violent, when she was in fact hostile when put in know and recorded trigger responses.
Do not sign anything on the form, except permission to do the assessment, until you have seen it completed and are satisfied the person’s needs are stated specifically on this document and how those needs should be met.
Do not assume all is transparent and honest. Do ask for evidence for what they say, and do ask for that evidence to be documented and ask for context to be included re blanket statements. Do not allow the content to be left ambiguous as they will use it the way they wish.

September 29, 2014
Steve Burns wrote…

1. We had no personal contact with my mums assessor who went ahead with the assessment despite no family member being present knowing our wish to be present. My mum was a vulnerable adult in the last stage of her life and in our opinion unable to provide consent for an assessment. Regardless it went ahead.

2.We had no contact we my mums assessor.

3.We have obtained a copy of my mums assessment 3 months after her death despite numerous requests to provide it. Her signature on the form provide gives evidence of her very frail condition. My mum was refused Continuing Care funding

4. On reading the assessment it became apparent our assessor had scored from the guidelines enough to fulfill the criteria for funding. I demanded an explanation from the Clinical Care management and have a written response that the guidelines need not be followed and it was the judgement of the assessor that in my mums case despite fulfilling the criteria show was not being recommended for funding.

I am currently challenging this decision and progressing a number of complaints via the Patient Liaison Service with my local Continuing Health Care Team. I am doing this with background information provided by your excellent website.

September 29, 2014
Ali wrote…

My assessor told me Care Plans are not relevant she spoke over us saying it was “care on the day only” she had no clue of the national frame work – they are bullies and how nurses are able to do this job within the Code Of Professional Conduct – I don’t understand, they must ALWAYS act in the PATIENT’S best interest! How is doing this in any patient’s best interest? Does the Royal College of Nursing have anything to say about it?


September 30, 2014
Adele Dudley wrote…

I am sad to confirm that many nurse assessors do not appear to understand the national framework guidelines!
I am a nurse and I work as an independent CHC consultant. I have completed many DSTs in my time and now I am working for a local authority to represent them in the decision making process. It is shocking how badly the CCG behave.. Breaching no end of guidance! I pray that somebody eventually gets to the ombudsman so that the process can be examined!
The worst part is that I know my stuff.. I have read the National framework and have worked within CHC for 10 years! It makes me sad to see my fellow nurses being so uncaring and money conscious in what should be a completely budget free assessment! I honestly can’t understand the attitude of some assessors.., it is almost like they would be paying for the care personally!
No matter how hard you try you cannot make somebody eligible who is not. It is an evidence based assessment, however depending on your recording of the evidence (selectively very often) you can make somebody who is eligible sound not eligible and that is outrageous!
The whole process was intended to stop the so called postcode lottery style of funding. But I am afraid this is still very much in existence as local teams seemingly have local pressure!
Rant over but rest assured there is at least one of us trying to do the right thing!

September 30, 2014
Pauline Padley wrote…

Well done Adele Dudley…….keep up the good work and our fight to get a correct and fair assessment for our relatives.
If there were more Assessors like you, that have the person’s true welfare at the heart/centre of their work, and not the COST of care being their main driver (this appears to me to dictate the outcome in the majority of cases) then we might have more confidence in the decisions made and the process overall.
At the moment myself, and many others fighting the system, have no confidence in the process and nothing will change unless we continue to fight the fight in order to get the right level of care /help that is our relative’s by right.

September 30, 2014
Carol Somper wrote…

Dear Adele
After explaining what CHC funding was to my mother’s GP (he’d never heard of it) he arranged for a District Nurse to do the initial checklist with me. She was fantastic and agreed that my mum was eligible for the full assessment. My mother is living in a care home funded by social services, but only after my father paid out £20K that we can’t seem to get refunded (that’s another story). My starting premise was that my mother should have been CHC assessed before being taken into emergency care when my father (main carer) had to go into hospital – at which point we realised mum was far better off in a home as she has moderate severe Alzheimer’s, is a danger to herself and others without 24/7 monitoring, needs drugs administered and all personal care provided – she is totally incapable of looking after herself and was increasingly aggressive towards my father. I completed the full CHC assessment with the DN and she made a real effort to explain on the form that without the current level of 24/7 care my mother would be fully eligible for CHC funding. The CCG wrote back to say that funding could not be retrospective (although this is not the case in the guidance) and that current levels of care met all her needs – my point has always been that she should have been assessed a year earlier by the GP surgery and that her current situation demonstrates the level of care needed. Social services is meant to pay for people to live independently and not pay for dementia care. I am passionate about making the system work and just wanted to let you know that the district nurse who did the assessment was marvellous and tried her best to help.