Eligibility to NHS Continuing Care Funding?

Spruance

My 86 year old uncle has spent two periods of eight weeks in hospital separated by nine days of self-funded care in a residential care home.

After the first eight weeks, Social Services assessed his needs as 'low' despite the fact that he could not walk, was doubly incontinent, and had a urine infection. It did cross our minds to challenge the decision but we were so pleased to get uncle out of hospital we left things as they were.

However, after just nine days at the home, he was readmitted to hospital on 30th May 2010 after complaining of severe stomach pain. It turned out that he had a perforated duodenal ulcer and underwent emergency surgery during the early hours of the following day with just a 50-50 chance of survival. He did manage to pull through but spent eight days in ICU with extremely low blood pressure and had to have two blood transfusions as a result.

After the operation, one of the ICU consultants called us in for a chat to explain that my uncle was now on a 'downward spiral' as he also had symptoms of heart failure, chronic kidney disease and gall stones. The consultant also said that they had wanted to remove my uncle's gall bladder but chose not to as he would not have survived the surgery.

Throughout his second hospital stay my uncle had been complaining of having a very sore bottom due to pressure sores even though he had been on a hi-tech air bed throughout. We hadn't realised how bad these sores were until we were again called in by the doctors to be told that the sores were so bad that they had developed into an abscess which in turn had become infected. Unfortunately this meant yet another emergency operation with a higher risk factor than before due to the strain on my uncle's heart from the anaesthetic.

Again he managed to survive the operation but later developed a severe chest infection. The family believe that this was due to uncle being winched out of bed, taken to the shower room, showered for half an hour and then put back in bed with wet hair, near an open window. Perhaps not surprisingly the hospital deny this. The chest infection seems to have been the straw that broke the camel's back and since then we have noticed a marked downturn in his condition, and although getting any firm information from the medical team is like getting blood out of a stone, it was clearly the case that they felt that my uncle was dying. Indeed one doctor admitted that it was now 'in God's hands'.

Naturally we imagined that my uncle would remain in hospital until the time came as he was clearly not well enough to be discharged, and as we had seen no sign of social services (unlike the last time when they were hassling us every day), we reasoned that my uncle would eventually be placed in a single room.

However, it is now clear that social services had other ideas. Earlier in the week the man in the opposite bed to my uncle had told us that he had seen social workers with my uncle, but we assumed that he was mistaken and that they were probably physiotherapists working to clear my uncle's chest. It was pointless asking my uncle what had happened as he was utterly confused, and seemed to believe that he was back at work. It was also extremely difficult for even family members to ascertain what he was saying and indeed what he meant as what came out often made no sense at all.

Last Thursday, 22nd July 2010, we happened to spot a social worker (whom we had had a run in with previously) loitering outside the ward but at the time didn't make the connection, but then the nursing staff told us later the same day that my uncle was being discharged back to the care home the following day. We were aghast as up to this point no-one from either the hospital or social services had discussed this possibility with next of kin. It would also have been impossible for them to have got any agreement out of my uncle as he was completely out of it last week.

Despite family protestations he was indeed discharged back to the care home, but that is not the end of it. The care home manager informed us that she had visited the hospital on the Thursday morning to carry out an assessment at the hospital's request thus proving that this had been the plan all along despite the hospital's earlier denials. The care home manager told us that she had queried my uncle's apparent confused state but was told that this was because he had had 'a bad night' whereas in fact he had been like that every day for a week! On the basis of hospital advice she agreed to accept my uncle back into the home and he was transferred there by ambulance on Friday 23rd July 2010, arriving at around 5pm.

On arrival some case notes were handed over but these did not even begin to address my uncle's actual condition. He was also discharged with only over the counter paracetamol whereas he had previously been on morphine, and he had no dressings for his still healing abscess. However what the notes did say was that my uncle was an MRSA carrier and had evidence of MRSA in his nose, groin and sacrum (base of the spine) the latter two places being perillously close to his still open wound.

A basic summary of my uncle's present condition is as follows:

1: Unable to move on his own and has to be regularly turned in bed.
2: Unable to feed himself or drink without assistance.
3. Unable to swallow tablets (This is all he was discharged with).
4. In constant pain (now resolved I hasten to add).
5. Able to understand only the most basic of conversation.
6. Unable to see clearly, and he was always very deaf but this seems to have worsened.
7. Doubly incontinent.
8. Severe pressure sores and open wound (now dressed but not dressed on discharge) from previous pressure sore abscess operation.
9. Breathing difficulties. (He was always on oxygen in hospital but was sent out with none!).
10. Needs a special hospital-style bed (now arranged by District Nurse).
11. In hospital his chest congestion was being relieved by suction several times per day. No provision was made for this on discharge.
12. Requires extra precautions due to MRSA.

I could go on but you get the general idea.

Since being discharged he has been seen on no less than four occasions by emergency out of hours doctors and separately by the District Nurse. All agree that he was not in a fit state to be discharged from hospital. The District Nurse also stated that she would be raising a formal complaint against the hospital for poor practice and breach of proper procedure.

So apart from the catalogue of errors, is it reasonable to assume that my uncle should really qualify for NHS Continuing Care and if so how do I go about arranging it? At the moment we are given to understand that he is still classed as self-funding but this cannot surely be right can it? My understanding is that if the sole reason for your care is your health then the NHS should pick up the entire tab.

Sorry this is so long. It was longer but I have abridged it several times over but I think it important to give as much background as possible.

My uncle's prognosis is currently very poor and we expect the end to come fairly soon, which will actually be a blessing for his sake. All the same I don't see why he (or his estate) should have to have to pay as a result of hospital bungling.

Any advice would be greatly appreciated.

Spruance

cohentb

There is a lot of advice and experience on the PCT thread a bit lower down. It could be worth re posting this on that thread. You will also find a lot of info and links on there.

I would say you should ask for a re-assessment. However my case dates back 8 years so I am not on top of the correct procedures now.

Your case sounds typical of so many. I think you have a good case so do not give up...thats what they want you to do.

Good Luck.

emfaz

I would recommend that you speak to the district nurses as it appears that this home can't meet your uncle's needs and a nursing home may be more appropriate. The DN's can conduct the assessment for NHS funding and whoever represents your uncle has a right to be there.

It is the NHS and the dr's who make discharge decisions not the social services. Social Services should really have acted as an advocate and challenged the discharge decision.

In terms of the experience that your family and your uncle has had I would suggest that you contact PAL's (Patient Advice and Liaison Services) who can coordinate your complaints and assist you finding the information you need.

I know its awful but the system really is responsive to he who shouts loudest. Complain, complain, complain

I wish you all the best and am sorry that your uncle has not been treated differently as accurate assessments and dignity could have made a difference.

I am a hospital social worker and can't comment on the specifics of others practice but P.M me and I will happily try and point you in the right directions.

Savvy_Sue

cohentb wrote: »

There is a lot of advice and experience on the PCT thread a bit lower down. It could be worth re posting this on that thread. You will also find a lot of info and links on there.

This is the PCT thread.

dollywops

My advice to you is to contact the local PCT and request an assessment for continuing health care to be carried out as soon as possible. You will probably have to put your request in writing. Alternatively, the home where your uncle is residing can do this. The nursing home where MIL is a resident did this for us.

monkeyspanner

Sorry to hear of your Uncles illness.

There are so many areas of official incompetence detailed in your post I'm not sure where to start, but will try to detail a few areas where you could try to make progress.

Firstly you mention the your Uncle's prognosis is poor and the medical advice is that it will be a downward spiral. There are provisions in the CHC system for rapid assessments and end of life funding in these circumstances. You should contact the PCT CHC assessment team and ask for an immediate assessment. Incidentally the hospital are under an obligation (CRAG rules) to carry out an initial CHC checklist assessment prior to discharge and from your description I would have thought this checklist would have indicated the need for a full assessment. Here is a link to the fastrack assessment tool document
http://www.warrington-pct.nhs.uk/pdf/Continuing%20Care/Fast%20Track%20Pathway%20Tool%20for%20NHS%20Continuing%20Healthcare.pdf

I don't understand why the Social Services are not communicating with your family. As another poster said they should be acting in his best interest and advocating for him. I would contact them and insist on an explanation of their actions and that in future they consult with the family prior to making decisions of this kind. You don't mention if any family member has a Power of Attorney but it would help if one is already in place, although if it is the old style Enduring POA this will have no specific provisions for medical care.

I would suggest making an official complaint to the hospital but my experience this is unlikely to get any quick results as they will immediately go into defence mode.

Are the care home happy with this situation? Can they manage? If they are and can, it may be that your Uncle will receive better care in the home than in hospital.

I hope this helps.

beaujolais-nouveau

Speaking from experience, I would suggest that you insist that all decisions about your uncle are "clinically led". That is a "magic" phrase.

Social workers are not equipped to make clinical decisions. Again in my experience, social workers are vultures They are circling your uncle because he is currently self-funding. For his sake, you must ask the local NHS PCT to shoulder its statutory obligations to your uncle. The PCT is not allowed to hand over to the Social Services decision-making about your uncle's primary health needs. Insist that the PCT pull the Social Services off your uncle's case: they are interested only in his money.

Please could you name and shame the PCT? Not NHS Somerset, by any chance?

beaujolais-nouveau

monkeyspanner wrote: »

I don't understand why the Social Services are not communicating with your family.

I "understand" absolutely. The Social Services are not communicating with the family because they, the Social Services, perceive the family as "getting in the way".

The OP and uncle's family must make the PCT pull the Social Services off the uncle's case immediately. The Social Services have no business being involved with primary health care decisions.

Spruance

Thanks to everyone for the very valuable advice but things have been moving very rapidly since I made the original post.

The care home freely admit that had they known the full extent of my uncle's condition then they would have refused to accept him. The main issue appears to be that the hospital were at best economical with the truth, and I suspect intentionally. Not only was the care home not told about the MRSA infection until he was on site, but they had also been told that my uncle had been eating three meals per day. In reality he had been eating very poorly and might have had three spoonfuls of each meal in the week before discharge - if that! As a result he was severely malnourished and extremely dehydrated.

He was in the care home for 96 hours over five days from Friday 23rd to Tuesday 27th July 2010 during which time he was visited by the District Nurse every day and sometimes twice per day, also by two emergency L.I.V.E.S. doctors and three times by GP's from the nearby surgery. Yesterday afternoon we had a phone call from the senior GP saying that if my uncle was not immediately readmitted to hospital he would die within a fairly short time frame. The GP also indicated that we would be raising a formal complaint against the hospital for malpractice in their discharge of my uncle last Friday.

Anyway, he is now in the Clinical Decisions Unit (CDU) at the same hospital that chucked him out on Friday but this is more of a front line ward and to be honest it is like a completely different hospital. You are almost tripping over doctors whereas on the discharging ward you were lucky to get hold of one.

He has been placed in what the hospital call a Barrier Room (effectively an isolation room) because not only does he still have MRSA but they also suspect that he has C.Difficile too! He also has suspected pneumonia and/or pleural effusion, the latter carrying a mortality risk of 40%. Apart from this the main issue appears to be that they cannot fit him with a cannula to provide intravenous fluids/medication. A registrar spent two hours this afternoon trying - as an emergency measure - to insert a line into my uncle's groin but had to abandon this as my uncle was becoming too distressed.

The way things have been explained I think it is probably unlikely that my uncle will last much longer.

At the moment I am in too much of a turmoil to think straight about all of this,but suffice to say that there is going to be an almighty stink made once things settle down. I will also be pursuing Social Services for recompense for care home fees incurred over the last five days especially since my uncle was confirmed as medically unfit for discharge by all of the doctors that came out to him.

By the way, if anyone was wondering, this is regarding the Pilgrim Hospital at Boston. The nurses who have attended my uncle have, on the whole, provided excellent care but the administration side of things is appalling and least said the better about Social Services.

Spruance

monkeyspanner

The way hospitals and Social Services treat the elderly and infirm is an absolute disgrace. Perhaps the worst aspect of this is the diversion of attention away from supporting relatives who are ill towards fighting the hospital for proper treatment.

Your Uncle's malnutrition and dehydration on discharge is unfortunately not uncommon and although meal records are keep nothing seems to be done if the patient is not eating/drinking.

If you do want to follow this matter up I suggest you make a request for your Uncle's medical records sooner rather than later as relevant documents will almost certainly be "lost".


I hope your Uncle's condition stabilises soon.

margaretclare

Dehydration is terribly common. From my experience of older people (I used to go away living with people in their own homes) not one of them takes in enough fluids as a matter of course. They 'used to be told not to drink with meals and not after 7 pm'! It's now known that when we start to feel thirsty we are already starting to be dehydrated. 1 - 2 litres of plain water is now recommended for everyone, as routine. That means, at least 1 litre of water and preferably 2, every day. Dehydration will kill you quicker than anything else.

That said....the heroic efforts of that registrar to get a cannula into your poor uncle will have been defeated because his veins have collapsed.

It's a bit of a fallacy that you can catch a chest infection because of wet hair. He will have caught a chest infection because his weakened state made him vulnerable to any hospital-acquired infection that happened to be lurking around. I could say he was lucky to get a shower - in 4 weeks in hospital my DH did not get one! But obviously in your uncle's case he was inappropriately treated - the understatement of the century it seems!!! Poor man. I feel desperately sorry for him.