When does social care turn into medical care??

[Timbuktu]

Hello everyone.

Not really sure why i'm writing all this but somehow feel the need to 'let it all out' and hope that it makes me feel a tad better. Also, hope that someone may be able to give a little advice or support.

My mum was diagnosed with Alzheimers 4 years ago and since then my dad has been her primary carer. Naturally over time, mum got worse but for the most part was able to continue to live at home. However over the last 6 months she has deteriorated rapidly, culminating in a hospital stay before christmas. (dad couldn't move her from her chair and she was semi conscious).

Anyway, during her stay at hospital we were told that mum also had Vascular dementia and she had likely had a mini stroke. It was a shock to us as we had only been told she had alzheimers. Now mum can't eat by herself, is unable to walk and is incontinent. She does nothing but sit and stare. Heartbreaking.
Dad breaks down and declares that he just couldn't copy anymore, which in honesty was a relief to myself and my sister as we could tell he was struggling for a while.

So, to cut a long story short, mum is now in a care home, which due to personal finances mum is funding herself for the next few months until her income goes below 23k.

When i talked to the soical worker I asked how she could be deemed as 'social' care when she is incapable of looking after herself? and wasn't it the case that if someone is medically diagnosed in hospital aren't they eligible to claim 'continuing care'?
I was told that i had little chance of claiming as mum is classed as needing social help, not medical.

so here is my question....
Has anyone had any luck claiming 'Continuing care', specifically where dementia is concerned?

I suppose i'm dealing with this emotionally by being very practical and trying to 'sort things out' which i know will bite me on the bum at some point but it's helping for now.

Any help, advice would be appreciate.
Thanks
Jules

 

[ITBookworm]

Hi Jules and welcome to Talking Point,

I think everyone on here would agree that that the changes to their loved ones are due to a medical condition and as such all this talk of social care is nonsense. However the 'powers that be' decree otherwise It is true that if your Mum has other medical problems or her dementia requires her to have a large amount of nursing care (over and above help with washing, dressing, eating etc) then it might be possible to get continuing care. From the experience of others on this sight you have to be very seriously ill to get that awarded though!

Obviously not what you wanted to hear but do stick around - everyone is very friendly

 

[hollycat]

Hi Jules

No personal experience with CHC but have read the TP site on a very regular basis.

Unfortunately, I have read some pretty terrible stories of carers trying to claim CHC for their loved ones. A lot of the stories have left me with tears in my eyes.

I am really sorry that I can't provide a much more positive view for you.

If you type CHC or continuing health care into the search box at the top of the page you should be able to read a few stories for yourself.

Again, sorry I can't offer anything more positive

 

[Mariondb]

CHC is a rule unto itself and there is a postcode lottery! You have to remember that the people who make the decision are employed by the organisation who foots the bill so they have a vested interest in not awarding it.

The medics we came across with MIL stated that VasDem, Alz etc are "social" diseases and not medical ones. If you have looked at the CHC tool, the questions and indeed assessment results are very......shall we say.... open to interpretation.

My MIL was finally diagnosed with VasDem... Prior to the diagnosis her medical condition over some time was Congestive heart failure, Stage IV kidney disease, Hypertension, hyperkaelemia, CAA, circulation that is so poor her shoe size has doubled, a history of UTI's, poor mobility and urinary incontinence - her blood pressure has gone up to 237/117 and thereabouts!

From last April to October she spent 5-1/2 out of 6 months in hospital with one thing or another being subjected to 4 failed discharges as they played financial ping pong with her. During this time and prior to being diagnosed with VasDem she failed CHC assessment on medical grounds.........yes really!

By September she was totally immobile and doubly incontinent.....she was then diagnosed with VasDem but it was evident that her problems were medical and not "social" i.e. she was not that far down the road in dementia terms but could not look after herself because she was medically unable to do so.

Despite the District Nurse and SW stating that because of her medical needs she was too vulnerable to go back home and needed Nursing Home rather than Care Home support, and despite what were clearly pretty extensive medical needs, she failed her CHC assessment and we believe that is simply because they "played" on the dementia aspect and played down her medical vulnerability.

She was only awarded £108 per week nursing allowance and is self-funding.

You can push for assessment, you can appeal assessment and depending upon where you live you may be lucky and get CHC, but you are more likely not to, particularly if the powers believe the medical conditions are "caused" by this "social" disease.

 

[r18wly]

He who shouts loudest........

I have first hand experience of trying and eventually succeeding in obtaining Continuing Care for my father in the last 18 months. The situation was a little different in that my father had been admitted voluntarily to a mental health assessment unit, after a number of events and becoming too much for my mother to cope with. We were advised that a review had taken place and my father was not going to be eligible for continuing care, but we researched and requested a multi-disciplinary team meeting, which resulted in success. My father has few other health issues, but does have behavioural problems and is incontinent.

I suggest that you google "continuing care decision support tool" and download the pdf from the dh.gov website. It is a bit hard going, but if you take the time to read and understand the document, it might be worthwhile. It is bascially a set of questions about the level of need in various categories and the outcome depends on the number of priority or severe needs. One of the keys to our success in my father's case was getting the team who carried out the assessment to understand paragraph 29 which states that "well-managed needs are still needs". There is another document which you may wish to research, which is the National Framework for Continuing Healthcare - paragraph 26 of this relates to nursing services which are the ancillary to the provision of accommodation and therefore fall under the social services responsibility.

I hope that this helps!

 

[Carolynlott]

Hi,

In answer to your question "When does social care turn into medical care?", the answer is when the person doing the assessment decides. My Dad was turned down twice, but my Mum was granted CHC funding without me even knowing about it. She had been in an EMI residential home until last March, at which point the Manager told me they could no longer meet her needs, and that I would need to find a nursing home. I moved her in April to the nursing home my Dad is in, and her nursing assessment took place in June. By July they decided that she not only met the criteria to be in a nursing home but also she qualified for CHC.

To give you some idea of Mum's condition as a comparison, she is totally immobile (although could walk with assistance at the assessment), doubly incontinent, severe cognitive impairment, totally unable to do anything for herself, at risk of pressure sores (she has an air mattress), eats very little and now weighs around 5 stone, needs liquid meds as she refuses to take pills, aggressive, unable to say anything other than the odd word, and shrieks unbelievably loudly for a large part of the day so that she needs to be isolated from the other residents, and occasionally gouges her face. Other than that she does not appear to have any major medical problems, but just lies all day in her reclining chair and shrieks.
Good luck with your claim and best wishes.
C

 

[Kathphlox]

Me being the biggest cynic on the planet, it makes me wonder if dad would still qualify for CHC if he had to go into a nursing home. Is there a common theme here of those who don't get it, are they in nursing homes or needing to go into one? Dad has been assessed by the PCT every 12 months and for the last 2 assessments, he qualified.

At present dad lives at home where myself, hubby and with a good care package in place, look after his total needs, I'd say he's about on a par with a 6 month old baby, but with every medical problem you can think of.

He has the exact same problems that some loved ones of carers on here have, yet they didn't qualify for CHC.

I'd love to be proved wrong on this.

 

[min88cat]

When MIL was assessed in hospital, we thought she was borderline to receive CHC. We were advised however that our local PCT lays great store in the violent side of AZ and Dementia, and if MIL was exhibiting this symptom, and putting others (and herself) in danger by her behaviour, she might have got it. It seemed that the 'medical problems' didn't really come into the equation at all.

I think 'post code lottery' is the correct way to sum it up and until AZ and Dementia are NOT ruled as a social disease, people will continue to have trouble getting it.

 

[Tankette]

I cant offer much 'proper' information, just a little experience and send *virtual* support

My Aunt was diagnosed with vascular dementia approx 8yr ago, despite us knowing things wernt right for a while before that and she was supported at home by me and my mum, and eventually her daughter, things deteriorated, and she needed home carers x 2 a day and we would sleep over etc,

we believe she had a few mini strokes as we (luckily) found her shortly after x2 falls on separate occasions and took her into A&E for a check up,

a couple of years later she ended up in an elderly psych ward after locking her self out, (she would wander) and we didn't find her before the police did and she became a 'safe guarding' concern, where she deteriorated more as she didnt know where the toilets etc were on the ward,

she moved to a residential home for a few years, and the only reason she moved to a nursing home was because she had a few seizures and the hosp found out she had x2 bleeds in her brain, was then unable to walk or feed / drink herself, and the residential home could not cope / were not set up for this type of care, and she was then deemed nursing care rather than social care.

the nursing home was great and she received very good care there, it is very clean and the staff maintained her dignity as much as they possibly can.

 

[kal d]

yes i have experienced continuing care. my dad has vascular dementia he was in a nursing home and went down hill fast one day i went to see him and he was slumped in the chair i could not get him to respond i called the nurse to attend to him and she called the ambulance, i dont know how long he been in this condition., as luck would have it so to speak he was due to be assessed this day the lady who came to see him did his assessment and put forward for continuing care but sadly it came though the day after he died.
so i would say to you ask for another assesment they can't refuse you and tell it how it is don't hold back. i do this help you.

 

[PurpleJay]

Hi

Mum has continuing care funding.

She had stroke 7 years ago which affected her balance. She subsequently fell and broke her hip, she has walked with a zimmer frame ever since and has not been out alone. Her mobility has gradually worsened. She had a number of falls while on her own. 2.5 years ago, we bought a house together so I could look after her. She has osteoporosis and high bp. She suffered from some urinary incontinence and a frequent need to pass urine. She developed vascular parkinsonism.

Throughout 2011, mum was ill. Her mobility worsened, she became gradually more confused, suffered headaches, sickness, loss of appetite, depression, lethargy, loss of weight etc.

In August she was admitted to hospital with a uti and retention. Mum had became very confused while at home and this worsened in hospital. We initally put it down to the uti but after some time, she was diagnosed with vascular dementia. She seemed to have good days and bad days initially but her deterioration has been profound. She was off her legs on admission. She was sent to a community hospital for rehab before being readmitted with stomach pains (they found a gastric stricture - the reason for her loss of appetite and sickness/vomiting). While in the community hospital, it became clear she was not responding to rehab. While saying she could manage at home, she was totally unable to deal with personal care, washing, dressing, toileting etc. They also said she was needing a lot of attention 24/7 was anxious and shouted for help all the time or tried to get up. She struggled to comprehend what the physios said and the effort of trying to walk reduced her to tears. She would get stuck (the parkinsonism) and feel she was being rushed even though it took an age.

The DST assessment took place in Oct and she scored severe for Behaviour, Cognition and medication and high for a number of the other headings.

Mum is often aggressive, aggitated and anxious. She has scratched/slapped staff and lashed out at me too. She has thrown things (hairbrush, cups of tea). She shouts for help, asks to go home and threatens to leave or get the police. She is currently catheterised and has been doubly incontinent at times. She does not understand the purpose of the catheter and still frequently asks for the toilet.

She does not understand where she is most of the time. She does not understand her limitations and tries to stand or walk when she is unsafe. She fell in hospital and after that she had 1:1 care 24/7. Since moving to the home, they initially wanted extra staff at night but this had to be increased. She has been receiving 18 hours 1:1 per day 1:1 and now she is more settled and is sleeping a bit better this is being reduced to 10 hours in the afternoon/evening to see how they go. She has a hi/low bed, crash mat, sensor mats on the floor and the bed. She needs a lot of attention.

She is at risk of malnutrition weighing only 43kg at the time of the DST (this has improved a bit - she is currently about 49kg). The gastric stricture has been treated 3 times now but still has some swallowing problems due to both the stricture and the dementia. She has supplements. She is on a soft diet, reducing to puree when necessary. She has stage 2 thickened drinks. Mostly they say she has a good diet but she does need a lot of encouragement and can needs feeding (more often now).

At times mum refuses her medication. She was terrible with this in hospital and was convinced the staff were trying to poison her. Many times she refused her meds and needed coaxing to take them. She would often lash out, refuse, shout. Funnily enough she would happily let them give her an injection! She was the same initally in the home but seems a little better about it now that she is getting used to the staff. She was worried initially that they didn't know what they were doing. I have given authorisation for covert medication which they will only do if they cannot pursuade her. They haven't needed to do it so far. They are brilliant with her though and take time to reassure her. She is on mostly liquid meds now because of the swallowing issues. She is at risk of pressure sores too due to her being underweight.

Mums mobility is very poor. Mostly she has needed 2 to transfer - a combination of parkinsonism, balance problems, cognition, concentration and general weakness/fatigue. At present she is unable to stand and had to be hoisted yesterday for the first time I am hoping this improves again as she has a uti at the moment. She is at high risk of falls as (when more mobile) she tries to get up a lot unless someone is sitting with her. She had about 3 falls from the bed/chair in the home prior to the daytime 1:1 care being approved.

I have two friends who have fought to get Continuing care funding with no success. One had her father in a nursing home with advanced alzheimers. He was granted funding for the last week of his life. The other cares for her MIL at home. She cannot be left at all. 24 hour care takes the form of my friend, her husband, social services and day care. This lady is not aggressive or aggitated and does not have the nutritional or mobility issues which my mum has and is compliant with her meds. However she does need constant supervison and help with preparing meals dressing, toileting, washing etc. CC funding has been refused and they have appealed which was also unsuccessful. The pct argument seems to be that she does not need 'nursing care' and her needs are classed as social, not medical despite the fact that dementia is an illness.

I hope this is of some help to you.

Jane x