If you missed the BBC Drama, “Care”, on Sunday 9th December 2018, then it’s really worth watching on BBC iPlayer – highly recommended.
Congratulations to the BBC researchers, writers and whole production team for bringing this realistic, chilling and hard hitting drama about elderly care and care home funding issues, so convincingly into the public domain.
As the drama unfolds, it gives a snapshot of how society deals with elderly care, the heart-breaking emotions of putting a dear relative into a care home, and the sheer frustration and battles families face when seeking to get free funded care from the NHS – known as NHS Continuing Healthcare (CHC).
This is the first time we can recall that care funding issues for the elderly has been dramatised so expressively, and in such a realistic way. Such was the realism that some viewers with parents in a similar situation, may find the drama too disturbing to watch.
The availability of CHC and hurdles in trying to get this funding may have been a revelation to viewers, but these frustrations are nothing new to Care To Be Different. Care To Be Different was founded as a result of one individual’s campaign to obtain CHC for her parents and triumph against the might of the NHS machinery. The Care To Be Different journey is, indeed, very similar to Jenny’s portrayed in “Care”, and the determination and resilience needed to continue to fight for your rights for CHC, against the odds. Those already seeking funding will be familiar with hurdles they have to overcome to get CHC funding.
Jenny’s surprise reaction on hearing about NHS Continuing Healthcare funding is, from our experience, going to be very similar to many other people watching the programme – who will probably never even have heard of this term, and the availability of free NHS funded care. Think of it as the NHS’s best kept secret!
So, to help others, Care To Be Different provides lots of helpful free information and resources to assist families going through the same CHC funding process, and we encourage others to share their experiences online.
What is NHS Continuing Healthcare funding?
Quite simply, NHS Continuing Healthcare funding is free funded care for people with ‘healthcare needs’ ie needs related to the treatment, control, or prevention of a disease, illness or disability and the aftercare of a person with these needs. So, if your relative is eligible ALL their care needs and accommodation should be paid for by the NHS. Care is free at the point you need it.
What can we learn from this drama?
If you look at the drama as a live case study, there are so many relevant true-to-life issues and topics covered to help your relative if they’re going through the same CHC funding process:
“Care” – A brief synopsis:
Mary is driving her two young granddaughters back home after going to the local chip shop. Mary suffers a stroke whilst driving, but Mary’s catastrophic stroke leads to severe cognitive impairment. Upon discharge from hospital she goes to live with her daughter, Jenny. But Jenny soon realises that she cannot look after her mother and makes the heart-wrenching decision to put Mary into a care home for her own best interest – thinking that she will be safer and better cared for by professionals.
Coping with mother at home and putting her into care
The drama highlights the helplessness families feel whilst trying to keep a dear relative in a familiar home environment. But too often, it becomes unmanageable due to the relative’s demanding care needs, and puts a strain on family and relationships.
Mary is now placed in a care home as Jenny can’t cope with her mother at home, however hard she tries. We can associate and empathise with Jenny’s upset and feeling of guilt.
The drama then focuses on substandard care in the care home, with only 3 carers on duty looking after a disproportionate number of residents (30) – some of whom, it is assumed, are left isolated and alone for long periods without attention. We see one elderly resident urinating in the corridor due to inadequate supervision and insufficient funding to buy supplies of high quality absorbent incontinence pads. Mary’s cognitive deficit, means she has no sense of place and orientation. Due to lack of close supervision, Mary wanders out of the care home at night in her dressing gown – presenting a potential danger to herself and others. This may sound all too familiar to relatives with dementia.
Mary’s cognitive decline exhibits some typical symptoms – such as aggression, hitting out, verbal abuse, wandering, screaming, blank stares, refusing to take medication – again, all symptoms that will resonate with many families who have a relative suffering with dementia or cognitive impairment.
Jenny and her sister, Clare, try and come to terms with their mother’s rapid decline, and after she suffers another stroke, Mary ends up back in hospital. In the meantime we see Mary’s mental health deteriorate further. So unrecognisable from the start of the drama, when we see Mary as a spritely, well-dressed and independent woman, now transformed into a mere shadow of her former self, unable to communicate reliably, living in her own world, and requiring 24 hour specialised care for all her needs.
Care Home funding…
Whilst Mary is still in hospital, Jenny visits a better quality, more expensive care home, to see if they will accommodate her when she waiting to be discharged from hospital.
Funding is discussed, but Jenny cannot afford the care home fees of £700 per month. She is told by the care home manager that the fees will have to be paid from the sale of Mary’s house. When Jenny replies that it’s a council house and her mother doesn’t own her own home, the manager asks whether she has any other assets, because the council would put £400 towards the cost, leaving Jenny to pay the shortfall. Only at that point, as a last ditch effort to get the care home fees paid, does the manager then raise the issue of NHS Continuing Healthcare funding as an option. Jenny looks blankly and has never heard of NHS Continuing Healthcare funding. How familiar!
- Until this drama, the vast majority of the public will never even have heard of NHS Continuing Healthcare (CHC).
- Many thousands of families may have had to sell their parents’ homes NEEDLESSLY to pay for their relative’s care.
- Moreover, they may not even know that they could still be able to reclaim these fees paid, retrospectively.
- Most care homes would probably prefer to have private funding if they can get it from families, as they can often charge more than the CHC funded rate.
The Multi-Disciplinary Team (MDT) assessment
Jenny and Clare attend a Multi-Disciplinary Team assessment conducted at hospital prior to Mary’s discharge. The assessors want Mary’s bed back and the issue of bed-blocking is raised. No funding alternatives are presented to the two sisters. They need to find a care home quickly to house their mother.
When the sisters then raise the issue of CHC and query why they weren’t even told about its existence, the NHS assessors look sheepishly caught out – and respond that they had assessed Mary ‘informally’ (really!!) and that her needs wouldn’t have qualified anyway! The claim for CHC funding is rejected out of hand.
Scandalous! But sadly typical of the stories we hear from families who have had similar ‘partisan’ assessments.
The assessors were portrayed as protecting their NHS budgets by not volunteering a CHC assessment. The outcome of this Multi-Disciplinary Meeting was a foregone conclusion – rather like asking the NHS to mark their own homework. Jenny would never have found out about CHC funding had it not been previously mentioned by the care home manager. Her internet research led her to find out more about this complicated and little known area of NHS free funded care. Perhaps she came across our helpful website!
- This scene will resonate with many people who are familiar with the CHC process. Experiences may differ, but generally, the process is not typically user friendly, and evidently seems slanted against individuals seeking CHC funding.
- The system is designed to work for the NHS and you have to know how to challenge the NHS.
- Failure to get it right and give it your best shot, can cost thousands of pounds in wrongly paid care home fees which could have been paid for by the NHS!
- Make sure you read up and get to grips with CHC funding because the NHS won’t voluntarily help you, as evidenced in the drama!
- The National Framework NHS Continuing Healthcare is very clear, that the purpose of the assessments is not for ‘financial gatekeeping’. “Care” was a perfectly blatant example of the NHS protecting its funds.
- Make sure the MDT assessors actually see your relative before making their recommendations. Otherwise it is an obvious abuse of process and gives ground for appeal.
- The MDT portrayed for drama purposes is a much abbreviated process than the real assessment. Read: What Happens At The Multi-Disciplinary Team Meeting? for more information about MDT assessments.
- Under the previous National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care 2012 such assessments were carried out in hospital prior to discharge. Tactically it was considered more advantageous to keep your relative in hospital and ‘bed block’, in an effort to get the NHS to speed up the assessment process. Now, that tactic is no longer appropriate, as most assessments will take place outside of the hospital setting under the New 2018 revised NHS National Framework. In the meantime, the NHS are obliged to put in place an interim package of care until the assessment outcome is known. For more information, read our helpful blog: What’s new in 2018 NHS National Framework for CHC? Are you getting an interim care package.
Appealing the MDT decision
Mary’s daughter then launches an appeal and the whole CHC process is dramatically cut short for drama and viewing. It skips the Local Resolution Panel Meeting and jumps forward and straight to an Independent Review Panel (IRP).
- Although we know this is just a dramatization, don’t be fooled. You have 6 months to launch an appeal from an MDT assessment, and it then invariably takes weeks, if not months, to get a date for the appeal to be heard at a Local Resolution Panel Meeting. Find out more about this Appeal stage, read: Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision
- If your relative’s case is rejected at the Local Resolution stage, you can still appeal to an Independent Review Panel – which is really the last Appeal stage and is conducted by NHS England. Again, you have only 6 months to lodge an appeal and it can take literally months between appeal stages, and then further weeks afterwards before the outcome is communicated to you. The whole CHC process for funding and appeals can take so long, sometimes even years, that sadly often individuals do not survive to derive the benefit of CHC funding in their lifetime as the frustrating NHS process drags on.
At the Independent Review Panel Meeting, the sisters confirmed that they had Power of Attorney to act on their mother’s behalf. The sisters gave a history of their mother’s pre and post stroke condition. Jenny reads from the consultant’s letter which says Mary has suffered a major stroke; has developed severe cognitive impairment; has expressive and receptive dysphasia and cannot retain information; is confused and fails to understand; it is extremely difficult to communicate with her; she is found wandering the ward, agitated and occasionally very aggressive; has significant mental health issues; and has lost the ability to make decisions; states there is no evidence of any improvement and it is likely that these adverse effects will be long term; she needs supervision and 24 hour care from qualified nursing staff for her medication and other daily activities.
The clear picture conveyed by Mary’s consultant, is that she is seriously ill – which as we learn, is entirely contradictory to the rosy picture presented by the NHS assessors. No comment!
Jenny points out to the Independent Review Panel that her mother has only been in hospital twice before – once to give birth to her, and a second time to give birth to her sister, Clare. She has not cost the NHS any money, but has paid towards the NHS her whole life. She has never been a drain on the NHS, but now at the point when she needs care, she has been denied free funding. How damningly accurate this comment is, so typical of what we hear from families – who ‘scrimp and save’ all their lives, pay taxes, and at the point when they need the support of the NHS, they have to fight so hard to get it!
- The Independent Review Panel Meeting conveyed is also abbreviated for dramatic purposes and are never this quick! They can often last for at least a couple of hours, as bundles of paginated GP, hospital and care home records are carefully scrutinised by all parties to pour over eligibility for CHC.
- The NHS’s representative will usually try and present their party line and contest funding. You will need to be fully prepared to handle the Independent Review Panel Meeting.
- “Care” can only offer a dramatic flavour of how the Appeal is conducted. Yes, you can try and argue for funding yourself as Jenny and her sister did, but this is your last real chance to get funding, so you may want to employ the services of a specialist advocate to argue your case on like terms with the NHS. For further help, read our blogs: Rejected for CHC funding? Part 2: How to appeal the Local Resolution Decision; Can The MDT Panel Refuse To Proceed If I Have An Advocate?
- Jenny and her sister were acting for their mother under a Deputyship Order which had to be obtained through the Court of Protection (as their mother lacked mental capacity). This is a reminder for families to have a Lasting Power of Attorney in place for such unfortunate (foreseeable or unforeseeable) eventualities. Obtaining a Deputyship Order from the Court of Protection can take many weeks and can be very expensive. A simple Power of Attorney would have avoided this delay and cost, and enabled Jenny and Clare to make critical (perhaps lifesaving) decisions for their mother’s healthcare needs. For more information, read our blog: Essential: Have You Got A Power Of Attorney?
- The National Framework is 167 pages long, packed with detailed information that is often beyond the proverbial ‘man in the street’s’ understanding. Families are battling with NHS assessors, who are trained and fully familiar with the NHS Framework, and use it as part of their daily ‘bible’ to govern their funding decisions.
- Getting CHC funding is often described as a ‘postcode lottery’ depending on where you live. CHC assessors often interpret the NHS National Framework differently or apply eligibility criteria subjectively. Therein lies the problem! A lack of consistency in approach can sometimes lead to some perverse decisions where funding is rejected even in the most obvious of cases (such as Mary’s with all her medical ailments), or else give ‘licence’ to assessors to toe the ‘party line’ and apply financial gatekeeping to protect NHS budgets.
Care To Be Different have been campaigning for years to help families going through the daunting process of getting CHC funding for their relative’s care. So well done to the BBC for highlighting funding issues and the challenges that so many families face.
Feel free to browse our website for more free information and resources.
Go and tell others about this programme and spread the word about CHC funding issues.