New 'continuing healthcare' framework document - system for funding older people's homecare

If you are getting care in your home, you might find it useful to get the new NHS guidance on 'continuing healthcare'. This is the funding system for paying for homecare if you don't need to be in hospital. It's more generous and flexible that community care funding from local authorities, but you can only get it if you need healthcare (so you get this free from the NHS), as opposed to help with the activities of daily living (which you have to contribute to and get from the local authority social services). It's a stupid division of responsibilities, which comes from the fact that healthcare is legally free from the NHS, but if you don't need the health element, they don't have to pay. The social services principle is that you should be responsible for your own everyday living needs, so you do have to pay for services to help you with that.

Anyway, there's a complicated assessment process, usually done by nurses from your local health services, which is described in the 'National Framework'. A new edition has just been published, so if you want the lowdown on what they're supposed to be doing, here it is. If you want to dispute what they're saying this is a useful guideline.

Link to the new National Framework.

If you're used to dealing with the old national framework document, you might find a newsletter from the lawyers Mills and Reeve useful. The new document has some changes in practice, and the order of the old document has been mucked around. This newsletter tells you about the changes and has a table setting out where you can find the main topics in the old and new documents.

Link to the Mills and Reeve legal newsletter.

Young and old drivers criticise each other

The maga Mature Times reports an AA survey which shows that both young and old drivers think that the other generation needs training to be better drivers. The article goes on to advertise the AA's courses for upskilling drivers. It quotes several older people who have reduced their driving at some stage of life and then have to start again, perhaps after being widowed.

This happened to me: I gave up driving for several years when public transport was more convenient, and when waiting for cataracts to be ready for operating on stopped me from being safe on the road. It certainly was a nervous time starting to drive again. And I must say increasingly I find public transport a much more congenial way of getting round, at least here in London. Threats to the freedom pass are a bit of a worry.

Link to the Mature Times article.

You can't know in advance how big your pension will be (New Report)

I’m back on to pensions again. There’s a new report out. Link to the full IFS report or click the pic. 

Apparently people in late middle age don’t understand their pensions, don’t have enough information to calculate what they’re going to get when they retire, and aren’t saving enough in the present economy. As I’ve been finding out while I negotiate my own pension arrangements (and OMG as younger people say on the internet, doesn’t it take a long time), you can’t really tell what you’re going to get until it flows into the bank account. But having been in various public sector jobs for half my working life, I was forced to save more than I would have done if I’d been left to my own devices, and this is the reason I’ve done better than others who didn’t have that requirement on them.

It’s unimaginable how much you have to save of your income (and you’ve got to be both lucky and not tricked out of money by our shoddy banks) to have a reasonable income during the long period that people are now going to be retired.

The ESRC are highlighting this report from the Institute of Fiscal Studies (that’s the organisation that always gets a big press commenting on how the Chancellor of the Exchequer’s got it wrong again when he presents a budget – I always like to look at the websites of people who are well-informed and critical).

Link to the ESRC short article. 

Rights for people getting home care

I’ve always been a bit doubtful about whether the human rights law can be used on behalf of older people (or anyone else) where there are problems with care services. But a new and rather trenchant pamphlet from the Equality and Human Rights Commission gives advice, probably based on some cases they have helped with.

Link to the Equality and Human Rights Commission pamphlet on human rigts and home care.

What’s particularly intriguing about this is that it’s about home care, where the services are delivered to your home. It’s a bit more obvious that when you are in care home, because it’s someone else’s property and you are probably more disabled or frail than if you are in your own home, you are more likely to have your rights curtailed. But of course people giving you more or less the same care in your own home have more chances to interfere with your private life and are less likely to be observed by someone else doing so.

The pamphlet deals with several of the human rights enshrined in the law, and here are some examples of what it says. Anyone who works in the care services knows that some of these things happen, because of financial pressures and sheer lack of consideration. It’s not that I think people using care services should be going to law all the time, but I do think we should be thinking much more clearly about what our rights are. We can be grateful, but we don’t have just to be grateful; we are entitled to get appropriate help too.

You can see from the dots that I've edited this - there's a whole lot of useful information in the pamphlet.

Article 2 “Right to life”

Public authorities must not place your life in danger. If someone dies as a result of consistently poor treatment by care workers, this may be a breach of their right to life under Article 2. It may also be a criminal offence.

Public authorities must also act to ensure your life is protected. For example, councils must ensure your care package gives you enough support for your assessed needs…If a care worker does not raise concerns about a serious deterioration in someone’s health and this contributes to that person’s death, this could also be a breach of the person’s right to life.

 

Article 3 “No one shall be subject to inhuman or degrading treatment”

Depending on the circumstances, examples of inhuman or degrading treatment by care workers could include: repeatedly failing to change your soiled clothes or bed sheets if you are incontinent not providing you with enough food or water failing to wash you over a prolonged period if you cannot wash yourself if you are bed bound, not moving you over a prolonged period so you get severe bed sores using excessive force to restrain you.

Only the most serious cases of poor treatment will be considered a breach of this right. However, other cases may still count as a breach of your right to a private and family life, home and correspondence.

 

Article 5 “Right to liberty and security”

You have the right not to have your liberty taken away from you. You should be free to leave and return to your home at will. You should not be prevented from leaving or returning to your home by other people.

Care workers should not lock you inside your home.

They should not stop you from going outside because you have a tendency to fall or if you might get confused. To do so could be a breach of your right to liberty and security.

 

Article 8 “Right to a private and family life, home and correspondence”

You should be able to live your life as you choose. It is your right to request care workers leave your post unopened or leave you to take a phone call in a different room if you wish...

...when care workers are helping you to wash, you can very reasonably ask them to close the curtains, close the bathroom door or place a towel over you to protect your modesty.

If you cannot live with your family you should be allowed to have regular contact with them. For example, if your spouse is moving to a care home because it is unsafe for him or her to live at home, the council should not place your spouse in a care home far away, where you would not be able to visit them. In offering your spouse a care home placement, the council must consider your rights to a family life and those of your partner.

Care workers turning up late, not carrying out all of the tasks listed in your care plan or simply not carrying out tasks properly could amount to a breach of your right to a private life.

Care workers must change what they do if you ask them to be more careful, use disability equipment correctly, and not cause you discomfort or pain. If they do not respond, they could be breaching your human rights.

You might prefer to have meals being delivered to you, a laundry service, or door to door transport instead of a care worker. If you do not want care workers to visit you at home, perhaps because you find it intrusive, you do not have to accept this help.

Your care worker cannot make you wear items of clothing you do not like or would not normally wear. Your care worker cannot make you wear slippers on a shopping trip just because it is easier for them to put them on instead of outdoor shoes. If you are stopped from wearing clothing or jewellery related to your religion, this could also count as a breach of your religious freedom…

If care workers are visiting at inappropriate times to help you, this undermines your right to control your day. For example, being put to bed or being helped to eat too early or too late could be a breach of your right to a private life. If care workers are visiting at irregular hours so you cannot go out to visit friends or family, this could also infringe your right to a family life.

 

Article 9 “Freedom of thought, conscience and religion”

…Care workers should be able to help you to practice your religion. For example, if you wear a turban, hijab or a cross and chain because of your religion, your care worker should help you to continue dressing in this way. Likewise, if you follow a particular diet because of your religion, for example, a halal, vegetarian or kosher diet, you should get meals that meet these requirements.

 

Article 14 “Right not to be discriminated against in the way your human rights are protected”

Your human rights cannot be breached or enforced differently because of your age, religion, gender, sexual orientation, ethnicity, political beliefs or your disabilities. This right can only be used in connection with another article set out in the Human Rights Act. For example, a Muslim does not get halal meals, but his Jewish neighbour gets kosher meals from the same home care agency. The Muslim man is being discriminated against in the enjoyment of his right to practice his religion.

Support Grey Pride

Support Grey Pride: it is a campaign for a Minister for Older People, just as there is a minister for children. I think this is important because older people need to have someone concentrating on making our social provision right for them - not just care services, but all sorts of provision, like better banking and transport for older people.

The website is good, and you can contribute to their blog.

Link to the Grey Pride website.

Daily caring for somone with dementia

How someone cares for another important person in their life is a crucial part of experiences of ageing both for the carer and for anyone being cared for. Many of us do this in mid-life for the older generation and experience it later when it comes to our turn. Rob writes a blog and has also written an account of how he cares daily for his mother: but he is in his twenties and she is ion her fifties; she has Pick's disease, a fairly rare form of dementia that affects people in the middle of life.

Rob's account of caring is striking in its honesty and practicality. He says:

I am committed to ensuring that the last few years of mum’s life are filled with as many happy moments as possible. This outlook on my responsibilities translates into completing activities with mum that focus on maintaining her independence, dignity, sense of involvement and enjoyment.

A good set of principles for this heavy personal responsibility.

Link to Rob's account of daily caring.

Other information on caring and finding care homes on the website of Care Homes UK

Link to Rob's blog, Demention

Draft assisted dying bill

The reality is that all older people are approaching the end of life, and so have an interest in debates on assisted dying. A proposed Parliamentary Bill is another attempt to get support for allowing people to commit suicide if they fear approaching death, but it will not help most older people, because it only provides for people who are told they have a terminal illness and excludes people without mental capacity (that is, you won't be able to get help to commit suicide if you already have serious dementia according to this proposal).

If you want to reply to the consultation, you have to do so by 20th November (there will be a report in February). You can see the proposals and the consultation form if you click on the Draft Bill link below.

I've been looking at this in my end-of-life care blog, so you might like to examine some more detail.

Link to the Draft Bill

Link to a post on the Draft Bill in end-of-life care blog.

Ageing: picturing parents and children

An intriguing websitewhich says something about ageing. A German photographer takes pictures of parents and their children.

Here's a screenshot of a blog showing some of the results:

Link to the 'My Modern Met' blog illustrating and commenting on the pictures.

Link to , the photographer's website

Ensure financial services provide the least information necessary

Back from holiday and spring-cleaning my filing system today, I find I have a huge accumulation of paperwork from the pension provider to my previous employers. Printed booklets galore and endless computer outputs of information.

I think having computers has led to all sorts of guff being regularly extruded. Most of it is pretty impenetrable, and although if I pay attention I can understand it, for most people I guess it will be gobbledeguff. This is not true information-giving, this is regulatory obfuscation. I suspect it’s issued to avoid having to provide clear explanation, and so that in the future they can say they told us, when in reality it’s about hiding from us. And it must also be a landfill-sized waste of money.

I think the financial regulator should not be making these companies produce all this stuff, but instead should have the stuff evaluated to ensure that information is provided in the most minimal form possible and psychologically assessed to check whether most people could take it in.

The routine in retirement replaces the time structure that employment once provided

Almost three months into retirement, I can begin to detect the elements of a routine, like the time structure to your life that work gives you. What is my routine looking like?

 

One factor is that I’ve taken up a new voluntary task of deputising for the organist at church. I don’t have to deputise very often, but to be adequate to the task when I do, I need to practise, and this means improving my keyboard skills - I’ve played the piano since childhood, but not practised so much in recent years. So most weekday mornings, I walk the fifteen minutes to church, picking up the paper on the way, have at least an hour’s practice, maybe do some shopping and then walk home. It also gives me exercise.

Then I still have some academic writing to do, so I settle down at the computer. As deadlines approach, I do this more vociferously.

You can’t keep going with that for hours on end, so I intersperse that with blogs. Greyamble, focused on policy, practice and experience on older people, is one of them – it is a mixture of personal experience, looking at policy and issues on older people, and just picking up interesting stuff on older people and services and policy for them. I do something similar on end-of-life care for my ‘Social work and end-of-life care’ – that’s more a professional blog, less personal and less non-serious stuff. I have two more occasional blogs on ‘big society policy and community work’ and ‘social work around the world’. I tweet about the posts and also use other media to draw attention to them. I have nearly 2000 followers on Twitter, so if a reasonable number of people pick up on a Tweet, there is a fair chance that a people who find it useful will see the post. That's more than the numbers of people who buy the average academic book or will look at the average academic article, although of course many people will use them in libraries.

I also have a blog on self-positioning; if you sign up to that, you get a gentle question that might help you with personal development, based on a picture, most days, but there’s been a gap recently. I usually do these in blocks and schedule them to appear daily, but didn’t manage to do this over the past few weeks, so they’ve run out. But I’ll start again soon.

When Margaret is at home (she’s grandparenting and socialising a lot) we have regular breaks for drinks and not too much nibbles, as I’m trying to reduce my size. And we stop for evening entertainment or activities at six o'clock.

Every so often this routine does not apply and we have what I regard as a proper retirement day, when we go out for some travel, tourism, art, theatre etc. And we hope to have some regular hols. Last week was with part of this with one of the grandchildren tribes.

Then there are the regular commitment: choir and choir practice, residents committee.

And the occasional academic jobs and preparation for them; one of these, a lecture at a local university, last week.

 

So far, I’ve not been back to the work I retired from yet, but I will need to do this to go to the library with the new book I’m starting. And I’ll need to go to the British Library and the King’s Fund library too, so I reckon, in winter, there’ll be a trip to one of those every fortnight.

And then I've got projects. The first is organising the stuff that came from my office into my study, so therefore reorganising the study. Then there will be a series of academic projects that I've been imagining I will get around to in my retirement. The reorganising will help here, because I'll set up boxes to collect the material for each project and then prioritise them.

Lots of time structure there: both in daily routine and longer-term strategy; a mixture of older commitments, one or two new things and one or two continuing things. A bit of sitting in the garden because it’s been summer. I think winter will mean more computer. It feels busy but not so pressurised, so as a time strcuture it seems OK. Lets see how it goes on in the longer term.

Communal accommodation in older people's flatlet schemes: useful, desirable?

Another pic of a flatlet scheme for older people; this is of the communal accommodation in one of the schemes I pictured yesterday. And it has an ad in the window for more residents, which marks out the block as accommodation for older people.

How useful is communal accommodation (a shared lounge): presumably it allows residents to build relationships in the scheme, and bring in others for meeting up, which in turn allows the living accommodation to be smaller. Is this what people want? Are they much used for either purpose? Do some places have organisers of activities, in which case does this move a flatlet scheme towards being more communal, like a care home

Flatlets for older people: criteria for design?

A third lot of pics of specialised accommodation for older people in Bournemouth. This time two flatlet schemes on opposite sides of the road. Modern, neat...boring? Does converting an older building produce a more interesting place to live or is a convenient modern interior the main thing and the outside doesn't matter?

Specialised accommodation for older people: what should the environment be?

Another pic of accommodation for older people in Bournemouth. This time the front views of the same two homes featured in yesterday's pic. An uninspiring outlook, compared with the view of the chine from the back. But possibly you might see a bit more human activity. Or at least passing cars, if you are stuck in your room. And you can move to the communal accommodation at the back for the pretty views of the chine.

All this is to raise the question: what should be the environment for older people's specialist accommodation?

Are views a priority in choosing a residential care home?

I've been in Bournemouth for a hol, and looking at seaside accommodation for older people. Photos over the next few days. This one, the back view of two residential and convalescent homes overlooking Boscombe Chine, obviously set up to give the views over the Chine. Chines, for the uninitiated, are steep valleys down to the seafront. But the height is likely to prove incapacitating, so all you get is the views. Are nice views a priority if you're choosing a residential care home?

Hospice and palliative care should be part of care for older people, not separate

I’m returning to Byran Driver’s comment, so I’ll mention again how this comes about.

A comment, from Byran Driver, has come in about a post a while ago on 19^th July; the comment is attached to the post, but I’ll reply in this new post:

I have recently been reading your blog and I was wondering if you could expand upon your point that you do not believe in palliative care and the hospice movement?  

The link to the original post. 

What I said was:

I don’t totally believe in palliative care and the hospice movement.

This was as part of one of my musings around the time that I retired from working in a hospice (actually, St Christopher’s, the original hospice of the ‘modern’ hospice movement). Link to St Christopher's Hospice

Yesterday, I talked about the priority I give to social work in my life: this post is about palliative and hospice care. Although until recently I’ve been working in a hospice, I have my doubts about hospices and palliative care. The reasons are that I’m doubtful about hospices because I think people should die in as natural a way as possible as part of their families and community, not in some specially designated place. And I’m doubtful about palliative care because it focuses on a small number of dying people who have a major diagnosed illness so that they can be treated as a separate group, and as a medical specialty it has displaced good community end-of-life care for everyone who is coming up to the end of their lives. And especially older people, who lose out because of palliative care’s emphasis on cancer and other major illnesses, instead of supporting good community provision for all older people that also includes the dying process.

Let’s start with hospices. Hospices started up based mainly on a model of end-of-life care provision which came to be called ‘palliative care’ and, when it became a medical specialty, ‘palliative medicine’. An important strand in the founding their founding was the work of Dame Cicely Saunders at St Christopher’s Hospice, in south London, where I worked. She looked at care of people dying of cancer in hospital and community services during the 1950s and thought it was inadequate. She founded St Christopher’s to demonstrate her ideas. Combined with many other people’s thinking and research at the time, this led to an expansion of palliative care.

In the UK, this led many local volunteers who liked her ideas to campaign and fund-raise for a local hospice. As the creation of many different local voluntary organisations, they come in various shapes and sizes but they all combine this idea of medical and nursing care to manage pain and other difficult symptoms with concern for the psychological, social and spiritual needs of the patients as they go through the dying process. Most of the provision in the UK is still in local voluntary hospices.

The first point to make about this is that it is not the same in many other countries. Many of them do palliative care mainly in hospitals or mainly in the community visiting people in their own homes. There are lots of hospices round the world, but putting up a specialised building is not easy or always the best choice in many situations.

Neither would Dame Cicely be all that keen on a universal adoption of this model. She founded an organisation and a building so that she could experiment outside the main state system of healthcare in the UK. But her aim was to influence all health and social care so that it dealt with the dying process better. Her commitment was to good care of dying people, not necessarily to create hospices.

And to some extent, setting up separate organisations and buildings cuts off care of dying people from the mainstream of services, it almost says: ‘To die well, you need some special place to die in.’ But no health service was going to fund separate places to die in for most people, so this is not the message we want to give. We need to say: ‘The dying process is important to people and their families and we need to handle it well everywhere’. Separating off places to die is unhelpful, but to get finance for an experimental service, it helped to have a building with wonderful facilities, because you have something to show people for their money. It’s an important part of fund-raising. It also came at the time (the mid-1960s) when communes and therapeutic communities were in fashion, so caring for people in special buildings seemed a good idea. Now people are less keen on institutionalised care, and we know it is difficult to keep up a good standard: just look at all the scandals about care in hospitals and care homes.

The voluntary/charity/3^rd sector organisation of hospices is also unhelpful.  They have to raise funds (the National Health Services only provides a small proportion of the costs – it varies but can be 30% or less). So they have to harp on about how special they are, when really what we should be doing is making the experience of dying special wherever it is. And they have to sell themselves by claiming how important their role is, when really they should be cooperating with the NHS to ensure that their role disappears.

Added to that, the selling process sentimentalises and separates dying. It’s not normal life: it’s medical and that means it requires professional help rather than being part of the normal life of the family. And it has to be lovely, in a nice environment, with specially caring people. Instead of which, the message should be, it’s a natural part of our lives that we should prepare for and, given the proper community nursing and medical care, any family can and should participate in the process in as natural a way as possible.

Having hospices as charitable organisations also allows the government to sentimentalise what ‘all these wonderful people’ do in this special way, and allows them to avoid responsibility for ensuring that a really good general service to help with the dying process is part of our health and social care system. So it allows the Conservatives to tell us that the voluntary principle is valuable, and part of the ‘big society’ that the Prime Minister likes to go on about. Really what they mean is they love not having to pay for most of it.

Now I turn to palliative care.

Palliative care, and palliative medicine, as the medical speciality is called, is a well-established form of healthcare practice, building on the pioneering work of hospices. The assumptions underlying it are that in advanced illness, expert management of symptoms, particularly but not only pain, allows people to have the highest possible quality of life and fulfil their life aims in the time they have left. I don’t object to that, but I’d like to point out what it implies.

First, it creates a medical specialty around the care of people with ‘advanced illness’, so that other doctors are expected to hand over their patients once they are close to dying because the important thing becomes caring for them sensitively, rather than active treatment. In this way, medicine is avoiding the issue of balancing care as you die with treatment for your illness, as though they were different things, whereas hey are actually two aspects of people's lives who are living with serious illness. Some doctors can go on saying what they do is cure, because they can leave the death bit to other doctors. It’s an example of the medical profession dividing people up into specialities for their convenience, rather than treating people in the round, so that they are not being realistic about what is happening to their patients, and not listening to what their patients are experiencing. Then there are disputes about handing over or not. But more important, it means that patients on the other side of the divide are not listened to with a curative mind in play. They are to be made comfortable, but any wish of more treatment is ignored as unrealistic. Some people are not happy that artificial nutrition and hydration (food and water) are withdrawn, but this is presented as a technical issue: in palliative care, once a patient is defined as having reached that stage, the policy is to withdraw feeding and hydration tubes. It’s not that I disagree with that policy, it’s that the division between the caring and treating is so sharply made, instead of one medical team taking the responsibility for balancing the whole of their patients and their family’s needs.

Second, palliative care as a healthcare specialty becomes divided from care at the end of people’s lives. Palliative care specialists in social and health care all tend to assume that this distinction is not important: end-of-life care is really just a branch of palliative care. But palliative care comes from the wrong direction. It’s about ‘advanced illness’ (that is, a diagnosable illness that has got so bad they can identify the characteristics of an end stage). A lot of government policy focuses on end-of-life care being provided in the last year of life. But nobody knows when you’re going to die, so how is care provided for people in this situation? Only if healthcare professionals can say to themselves that within a year you are likely to be dead. This is called the ‘surprise’ question: ‘Would you be surprised if this patient was dead in 12 months?’ If they would not be surprised, you are regarded as in the end-of-life category and might get some services.

But most people have not got a clear diagnosable illness, and this stops all kinds of other services including the end of life into their broader work. So social workers arranging for you to have some community care at home don’t think about the reality, which is that if they’re providing this help you are coming into that group of the population that ought to be thinking about and planning for their deaths. Again, it encourages the separation out of some special group as ‘end-of-life care’, instead of all the services balancing the whole of your needs, including end-of-life, but also thinking about how you want to carry on with your life tasks and whether the services they are providing are helping you with that, rather than just parking you until you come into the end-of-life category.

So for me, palliative care does not incorporate end-of-life care, it obstructs end-of-life care achieving the kind of balance that it ought to have in services for older people.

That’s why I have my doubts about hospices and palliative care: their separation and sentimentalisation obstructs good end-of-life care for everyone in the community.