Alistair shared his father’s story with us about the lack of care and coordinated thinking in his father’s case. It’s a seeming lack of concern for a frail and vulnerable man – and it shows how people in care homes can be invisible to the wider NHS.

His story highlights how, in this context, the care system puts patients at serious risk of harm.

Alistair also makes an interesting comparison between his father’s ‘care’ and that of his dog.

(Names have been changed to protect the father’s identity.)

Alistair explains…

Five months ago, my father who is 92 and lives in a care home in the south east of England, was taken ill. He said he had diarrhoea and stomach pains.

As it happens, at the same time one of my elderly dogs had a similar problem and we took her to our vet.

The care home monitored my father, as the staff said that this happens often with the elderly and they often recover after a few days. However, they didn’t think there was much wrong with him. A week later my father said he was feeling worse.

In the meantime, the vet had now thoroughly examined my dog and said he was not sure of the precise problem. Further tests were needed, which included a stool sample. He gave her an analgesic to help her with the discomfort.

After three weeks my father was now losing weight and said he was having to empty his bowels after almost every meal, but the care home said they still had no evidence of diarrhoea.

The results of my dog’s stool test came through from the Path Lab the following day, by email. She had a bacterial infection of the small intestine. The vet gave her antibiotics and within five days she had made a full recovery.

After a whole month, the care home decided to send my father to the doctor, who concluded that he could not find anything wrong with him. He thought my father may be making it up, but as a precaution reviewed and modified my father’s medication for diabetes and gave him anti depressants. He also arranged for a stool test to be undertaken. The test came back 10 days later as ‘negative’. It now also turns out it was the wrong test.

My dog is now ‘full of beans’ and has now resumed hunting and spends her days chasing rabbits.

After another month, my father is finding it difficult to walk, has lost 12 kg and says that he has constant diarrhoea and feels very ill and spends most of his time in bed. I phone the doctor who reluctantly talks to me. He says there is not much more he can do, but maybe my father should have a colonoscopy. He said he would arrange this, but the waiting list is more than two weeks long. He said he saw no point in visiting my father as he was being well cared for.

My dog catches her latest rabbit.

My father’s condition further deteriorates. He loses more weight and can hardly move or speak. He is getting no treatment. It is now three months since he became ill and we still do not know what is wrong with him! If we don’t know what is wrong with him how can he be treated?

I decided to seek private help and made an appointment at the local private hospital for my father to see a specialist. The next day I took my father to the hospital and paid £150. After 20 minutes the specialist concluded my father most probably has complications as a result of the winter vomiting virus he had in August. He gave my father a prescription to coat the lining of the small intestine and wrote to my father’s GP suggesting a further stool sample be taken.

He ruled out a colonoscopy due to my father’s fragility. He also recommended a number of medications that could be given to make my father more comfortable, should the first medication not work.

My dog catches her second rabbit.

The stool sample was sent to a London hospital. My father’s condition further deteriorated. He is now spending most of his time in bed asleep, exhausted and now totally incontinent. He was moved to the nursing floor of the care home – for an extra charge.

After a further phone call I eventually persuaded the GP to visit my father. He concluded there is nothing more he can do, as he says my father is well cared for and we have to wait for the results of the stool test (which he then said he had never heard of – and that he would not be able to interpret the results).

Today my dog catches a squirrel.

My father was now at death’s door and when we visited him he was always asleep. His weight continued to drop – to 61kg from 77kg in three months. After three weeks there were no signs of the stool test results and the GP refused to chase them, saying we have to be patient and “the results will come when they are ready”. One of the care staff at the home phoned the Path Lab to chase the results but they said they would only speak to the GP, who was now on holiday for two weeks.

The receptionist from the vet phoned me as part of their follow up to ask how my dog was.

We were expecting my father to pass away over Christmas. In a last ditch effort to save him, I phone the GP’s locum, who phoned the Path Lab and chased the results. The results arrived on Christmas Eve by fax saying my father had raised calprotectin levels, and suggestions for treatment were made. My father received his first medication later on Christmas Eve and we hoped it would work. As it happened it made matters even worse.

Dare I say the moral of this story is that if you are old and ill in this country, you can expect better treatment if you are a dog. My father has unnecessarily suffered pain, distress and humiliation for months due to the failure of our National Health Service.

Further update from Alistair:

My father has a new GP, and this is the note I recently sent to the new one:

“I visited my father yesterday, and he seems to have taken a downturn. A small piece of cake caused severe diarrhoea within five minutes of eating. It is possible that this may be a reaction to dairy cream which was given to him yesterday, despite care staff knowing he should be on a non-dairy diet.

As we have no notes, due to the change of GP and for the unbelievable fact that the new GP cannot have his notes for up six weeks (why?) and the almost certain long wait for a NHS specialist to examine my father, could you please advise me of a reliable private consultant that you work with, so that I may make an appointment to have my father examined.

I am deeply concerned that four months after the first symptoms appeared we still do not have a precise diagnosis. I am not prepared to stand by and let the system kill my father.”

Alistair continues…

I have been informed that if you change GP’s the new GP has to request your notes, by letter, to the NHS local HQ. They then write to the old GP and ask for the notes. Then, once a week, a courier collects the notes from the old GP. They then go to a central NHS ‘Post Office’ where they are sorted and then sent on to the new GP. This can take six weeks!

I phoned the ‘NHS post office’ today and asked why they are using such an antiquated method and was told, “That is the system.” I asked why the old GP couldn’t just send the notes to the new GP – and why the notes can’t be online. Both questions were met with hysterical derision. No wonder the NHS is in such a mess.

I have made an official complaint, and NHS England is undertaking an urgent investigation.

After weeks of chasing, the GP finally informed me of an appointment for my father with a gastro consultant at a local hospital. The problem is that my father is now so ill that he is bed ridden and doubly incontinent. They want me to get him to the hospital, in the freezing cold, so that the consultant can talk to him where the consultant works, for the convenience of the consultant. There is no way that anyone will visit him in the care home. This is like living in Dickensian times.

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Alistair’s story no doubt resonates with many families up and down the country who may also feel that the care system puts patients at serious risk of harm. At the same time Alistair is also having to battle for NHS Continuing Healthcare funding for his father.

If you’ve come up against a similar situation or have a comment about this, please share your thoughts. What can we do to make things better?

The different care and care funding assessments can be confusing

So what are the assessments needed for long term care? There are a number of different ones that may need to be carried out – and not all of them will be funding assessments.

It can be confusing when someone from health or social care tells you they’re about to ‘do an assessment’. So, if this happens, be sure to ask them two things:

1. What is the assessment called?
2. What is it for?

This may sound obvious, but in a time of crisis, and especially if the health and social care authorities are not keeping you properly in the loop, you can lose track of what’s going on.

Here’s our mini guide to some of the assessments needed for long term care that you might come across. (It’s not a comprehensive list – just some of the most likely ones. We’ve assumed here that your relative has health needs and that you are acting on their behalf.)

Assessments needed for long term care…

Home hazard assessment / safety assessment / rehab-to-home assessment

This isn’t always directly linked to long term care, but it can be part and parcel of the decision making process about where care should best be provided.

Who does it? Often it’s an Occupational Therapist.

When should it be done? It’s often done after someone has had a fall and/or a spell in hospital, and it determines whether a person’s home is safe for their return – and what adaptations may be needed.

Why is it important? It allows the person to be safely discharged back home. However, if you believe the assessor and/or the local authority has a vested interest (for whatever reason) in your relative going back home instead of into a care home – and that your relative’s safety could be compromised as a result, or if you feel that the hospital just wants to discharge your relative as quickly as possible, you can object to your relative going back home.

The assessor may ask you for a key to your relative’s house. If you’re not comfortable with this, say no.

Mental Capacity Assessment

Who does it? Someone who is well-versed in the Mental Capacity Act and is competent to follow the correct procedure for such an assessment. Read more about Mental Capacity Assessments here.

When should it be done? When a decision needs to be made about your relative’s care (or other matters). It looks at your relative’s capacity to make that specific decision; it’s not about their overall mental/cognitive state.

For example, if your relative is in hospital they may be asked whether they want to go back home; they may say yes, and yet they may not actually understand the implications of their answer – or the reasons they’re being asked.

Why is it important? Because if someone lacks mental capacity to make a specific decision, someone else will need to make that decision for them – and in their best interests. On the other hand, if someone does have mental capacity to make a specific decision at a certain point in time, that right should not be taken away from them.

However, if you believe the assessor does not properly understand your relative’s mental capacity (or lack of), or you suspect the assessor is not competent to carry out a Mental Capacity Assessment, and/or that the result of the assessment is wrong, be sure to object. Otherwise your relative’s safety and/or their rights could be seriously compromised. Ask the assessor what qualifies them to carry out a Mental Capacity Assessment.

NHS Continuing Healthcare assessment

Who does it?

Stage 1, The Checklist, can be done by any health or social care professional who understands the assessment process and the eligibility criteria, and is familiar with your relative’s health needs.

Stage 2, the Decision Support Tool, should be completed by a multidisciplinary team (MDT) involving both health and social care professionals – plus you. This MDT is led by a Continuing Healthcare nurse assessor.

If your relative is in a period of rapid decline (whether or not they are at the end of their life), a Fast Track assessment for NHS Continuing Healthcare may be done so that a quick funding decision can be made.

When should it be done? A Continuing Care assessment should be done before your relative starts receiving full time care – and certainly before your relative starts paying. No one should ask about your relative’s money or house before this has been done. It can also be done if your relative is already receiving full time care and nobody told you about it before or your relative’s health has deteriorated.

Why is it important? An NHS Continuing Healthcare assessment determines who is responsible for paying for your relative’s care; it may not be your relative who needs to pay – regardless of how much they have in savings or other assets. It’s vital that you are involved in these assessments and that your input is recorded in the assessment notes.

Financial assessment

Who does it? The local authority/local council.

When should it be done? Only after it has been clearly shown, through a Continuing Healthcare assessment, that your relative does not qualify for full NHS funding.

Why is it important? It looks at your relative’s savings and assets. If the value of these is over the current upper means test threshold, they will have to pay for their care. If they fall below the means test threshold, the local authority will need to pick up the bill. Your relative may still need to contribute something.

You will be asked to submit financial information. You do not have to do this – you can choose to just start paying the care fees, and the local authority will consider your relative to be ‘self-funding’.

Social care report

Who does it? Someone from the local authority or local council or social services.

When should it be done? When anyone’s care needs are being looked at.

Why is it important? To ensure that all needs are properly recorded and that suitable care is put in place. A record of social care needs is also important in NHS Continuing Healthcare assessments, because Continuing Healthcare funding covers nursing care plus social care needs.

Risk assessments

Who does them? Various people – health and social care people, the care provider, hospital teams, mental health teams, etc – depending on the type of assessment.

When do they happen? The relevant ones should be carried out at the start of long term care and updated regularly. Different or additional risk assessments may be needed as your relative’s health needs change.

Why are they important? The may include things like a falls risk assessment, a Waterlow chart (risk of skin breakdown), behaviour chart, tests for cognition, MUST scores (malnutrition risk), SALT assessments (speech/swallowing), etc. They are used to build a picture of care needs and risks (as well as indicating what care is required), and they play an important role in the evidence required for a Continuing Healthcare funding assessment.

Care assessment

Who does it? It is often carried out by a care manager (or similar person) from a care home or care provider.

When should it be done? Before you start receiving care from that organisation.

Why is it important? It looks at whether that care organisation can actually look after your relative – whether they have the skills and the facilities for your relative’s safety, health and wellbeing. It is not an NHS funding assessment, nor is it a local authority financial assessment of your relative’s means.

It can be useful to attend so that you can raise all the various health needs and risks that the care provider should be aware of.

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With the possible exception of a Mental Capacity Assessment, it’s a good idea to attend each of the above assessments yourself, so you can input valuable information and be sure that things seem in order. Ask for a copy of the assessment notes afterwards, too, these will show what has and hasn’t been taken into account.

With some risk assessments, there isn’t an actual meeting to attend; instead notes should be kept by the care provider and updated regularly. It’s a good idea to check these from time to time.