Dementia, Social Work and Awareness

Dementia awareness week starts tomorrow on 19th May. When I think about ‘dementia’, I don’t think about government initiatives and new exciting ways to ‘raise awareness’. Raising awareness is good but only if we are raising awareness with a reason. Awareness isn’t enough. I’m an avowed cynic of the government’s ‘Dementia Challenge’ for many reasons but not least, the name. Dementia is not and shouldn’t be a ‘challenge’ any more than we need a ‘broken leg’ challenge or, to put it perhaps more honestly, an ‘age’ challenge. Fundamentally the language of ‘fighting’ dementia is embedded in an ageism that doesn’t recognise that dementia is a process and a range of symptoms that can look very different from person to person, family to family and society to society.

When I think about ‘dementia’, I think about the people I’ve had the privilege to work alongside as they experienced challenges of the systems that we have created to make experiencing illness more of a challenge. The ‘challenge’ isn’t dementia. The ‘challenge’ isn’t age. The ‘challenge’ if we want to use that language, is one of a health and social care system that stigmatises and isolates. That creates language and rhetoric around ‘choice’ and ‘involvement’ but rarely delivers or delivers in inequitable manners which further increase the challenges to those who have to navigate systems.

I think about Rose and Maisie. George and Bill. I think of Dorothy and Lily. I think their families and those of them who didn’t have families. I think of the different types of dementias and memory impairments that have affected the people I  have met and their famillies. Alzheimer’s, most commonly, but also vascular, Lewy Bodies, Korsakoff’s, Picks and the many that have names I can’t remember. I also think about the calls for more dementia nurses, more Admiral nurses, which I am sure is a good thing. But I want to draw out a call for more dementia social workers because I think, if there’s a role that can be played, it has to move into the territory that social work  has, in the crux between medical and social systems.

I worked in an older adults mental health team before ‘memory clinics’ came into being. Memory clinics are good. They are good for diagnosis. I argued for a social worker or two in our memory clinic but there was no funding for it. It wasn’t seen to be ‘necessary’. No, we need nurses because nurses can follow up the clinics. Nurses can monitor the medication. We don’t want to pick up care management responsibility for the group of people who would come into memory services because that is the local authority’s job. These were the responses I had. And there’s the rub. There was and perhaps, still is, the opportunity for single care coordinators to link between health and social care and if any are best placed for straddling that divide, it is the mental health social worker who specialises in dementia.

While I worked in a mental health trust, I had good working relationships with the multidisciplinary team but my social work background gave me an additional role in terms of managing, developing and advocating for those who needed social care support as well. Amid all the calls for more support and research in dementia, we see little call for more social workers who specialise in dementia care, and I think we are missing a trick. Of course, I’m biased. It was an area I loved with a passion. I do think that if there’s one area in mental health services that we can, and should, push against the removal of social workers, it is in the older adults services and dementia particularly.

Working in dementia services, I worked a lot with families, sometimes at great distances because they did not live near their loved ones. We ensured that the information was there to guide people through the systems – when we had it anyway. We worked particularly with people who ‘didn’t engage’ with services (I hate that term) because they didn’t understand or acknowledge their diagnoses and often the work we did would be very slow at first. A knock on the door. A few words and a smile. We kept going, kept going, until our faces became familiar. We had the opportunity to work in different ways and to build up relationships. I was lucky with my managers. We had different criteria for admission into our services than the adult teams. When I visited some people, two/three times a week – or undertook visits to family members to offer an ear to listen – even if there was little practical support I could give, it felt like time well-spent but it might not have been exactly ‘working to the service model’.

If I could design a model for dementia care, it would have social workers at the heart of it. There would be multi-disciplinary teams of course,  but they would include district nurses as well as community psychiatric nurses. We’d have some specialist OTs, medical covers and social workers would be the care coordinators – straddling the balance between health and social care systems. The support would be there for families and friends as well as those with none. We would have time to put together support plans which were able to ensure that people’s wishes were captured as soon as possible and work on advance directives and lasting powers of attorney from the first point of contact. But if people didn’t want to discuss those things and just wanted to ‘be’ – we can do that too.

Social work could be a key to unlocking integrated dementia support systems and as a profession, we have to ensure that our voice is not lost. The desire to medicalise dementia is a result of a nonsensical funding system where health is funded through the NHS as free at the point of delivery whereas social care is means-tested. This means there are many interests regarding freezing social care and social work out of dementia services. People don’t want to pay for services when they could be delivered free. This shouldn’t though, drive policy in the future and without social care sitting alongside nursing, we risk losing the heart of support systems which need to reflect social situations as much as medical needs. It’s imperative that the voice of social care remains at the heart of dementia care and dementia services.

Maybe we need some ‘Admiral’ type Social Workers out there.  Meanwhile, for dementia awareness week, we should examine what we want dementia services to look like and ask people who have dementia to tell us what they want from services rather than making decisions around what we think is best. I think social work and social work values are particularly well-positioned to seek and respond to those voices.  As for awareness, it’s better than lack of awareness but as we move into an ‘awareness’ week, it’s worth thinking – why do we want to become aware and what are we going to do when we are aware. Awareness without action or change, well, it’s not much better than a lack of awareness.

Are Beans more valuable than People? – Or A Day at Community Care Live 2011

Yesterday I went to the C0mmunity Care Live conference. It is an annual event put on by Community Care Magazine and runs across two days. Being one of the very few free events (and excellent – free isnt the ONLY reason I go but it does help!),  I’ve always made an effort to attend on one or other of the days and try and catch up on the workshop and debate programme that is put together about a very wide range of subjects relating to social care in the UK.

I went to a few workshops and my attempts at ‘live tweeting’ were scuppered initially when a colleague from work came to sit next to me in the first session.

It was a packed session run by the Mental Health Foundation about their Dementia Choices project and the title of the session was ‘Can personalisation and direct payment support work for people with dementia?’. There was an initial presentation about the research evidence and the project that the Mental Health Foundation had put together to pilot direct payments among adults with dementia  and then there was a talk from the daughter of a service user whose direct payments had changed her life.

I was a bit disappointed though. Not with the presentation and talks – they were very good and it was obviously something that was very deeply felt by those who have direct payments working for them but, in a sense, I felt that the speaker who first received direct payments for her mother in 2003 (I think – that’s from memory but it was a good few years ago) could have made the same speech about their use about 2 or 3 years ago before the move of the more widespread personalisation agenda. Her mother had been receiving direct payments for 8 years. What was ‘different’ then with this new push towards everyone receiving a direct payment?  I refer to my previous points about us knowing that direct payments can work incredibly well if there is an involved family to provide support for the person who may lack capacity but for the isolated older person who lacks capacity there is no ‘magic wand’ to make the systems that are over-complicated seem suddenly more empowering if there is no-one to take on the support planning role.

I’ve said this before and will again that I feel currently there is a two-tier service that we are providing where those with involved families and carers may receive the more individualised support plans simply because the additional time burdens of arranging support is placed on informal carers whereas those who do not have those networks receive exactly the same services as they always do – we just call it ‘managed personal budgets’.

The workshop instilled in me a kind of despair that this group of people that I work with a lot has again been sidelined in favour of the ‘easier’ groups. Where is the research with people who have greater cognitive impairments and who don’t have family members or carers who can or who are able to manage their support plans for them? Ah, a role for the voluntary sector perhaps? The problem is that the voluntary sector is also shrinking and someone needs to pay them so that a role for ‘support planning’ is likely to mean a lower personal budget.

Still, I know I should try and be more cheerful about it. It just seems that so much of the research time spent about personal budgets has been telling us things that we already knew about research that had taken place around marginalised groups regarding direct payments.

The second session I went to was about the need for media and social workers to work more closely together. Social Workers should not be afraid of the media and the media (and by that, the panel were referring particularly to main stream media – because that’s where the battles are to be won!) – should have a chance to engage more with social workers. The usual subjects of local authorities barring their employees from speaking to the press came up and hopefully the College of Social Work will be addressing this on a broader scale.

There are a lot of inaccuracies reported and it would be good to see more social workers able to contribute to debates about the work which we do to quell some of the misunderstandings.

I then went to session on Making Personalisation Work in an era of cuts. I almost didn’t go because I thought (wrongly, as it happened) that it would irritate me and that it would be people lecturing to us again how it is the intransigence of social workers which is holding up the forward march of social care.

It wasn’t that at all and for once, it really did sound like people were actually listening to what I wanted to say about the personalisation agenda and my fears for it. There is nothing at all I would like to do more than work in a person centred way regarding care and support planning. This is something I hope that I have always been doing since I qualified though. If it can be improved, it must be and I am more than willing to change every way I have of working in order to improve it but, and this was noted by the speakers, Peter Beresford and Miranda Wixon (of Think Local Act Personal) in some ways the government’s agenda of cuts has overtaken the meaning behind the ‘personalisation’ agenda.

Unfortunately, there has been a drive to try and deliver more for less and it is not only unrealistic, it can involve pushing people into making choices that they don’t necessarily want.

Beresford made the point that the government agenda is about pushing everyone onto direct payments as the ‘preferred method’ of delivering personal budgets but, he said, crucially – ‘preferred by whom’. Well, that would be the government.

There are more ways of delivering person centred planning and person centred support than providing the cash for someone to buy their own services and while it can work incredibly well for some people, there is the very real and often ignored or side-lined issue that it is not everyone’s choice to have that choice.

The excellent concept of personalisation and putting the primary role of designing support into the hands of the user of that support and the services is being lost to the marketisation agenda.

There was a speaker on the floor, in the question time who explained that the rate of pay for carers was lower than the rate of pay for employees in Tescos – asking, ‘Do we really value cans of beans over human life?’. It makes you ponder for a while – but there are vast issues about the undervaluing of care and support staff in our culture – not just through poor pay but through poor status. Surely the ‘heroes’ of our society should be the home carers and the support workers as much if not more than the professionals whom we traditionally hold in high esteem such as doctors – who, while performing fundamental roles are at least well-compensated for it.

Another speaker spoke about an issue that I am all too aware of where choice is actually reduced for service users as in-house local authority provided services are frozen out of the provider choice that has been given to users.

Can personalisation work then, in an era of cuts? We don’t have any choice. It will because the concept is a good one although the danger is that it has been completed hijacked by a government’s cost-cutting enterprise which will end up making social care delivery so restricted that it will barely exist in all but the most extreme situations.

It is not possible to detach ‘personalisation’ from ‘the era of cuts’ as local authorities have to divest themselves of many of their functions. I see a lot of third sector organisations and possibly private sector organisations moving into the support planning and assessment verifying and supporting roles. The money (when it comes) may come from the local authorities but they will not necessarily be involved in many of the intermediate processes. It may well be that some aspects of the work are far better done in other sectors. It will become far more usual for people to pay for their own care as the eligibility criteria rise – those who can afford it anyway – those who can’t afford it may well be waiting until they meet the critical bands of need before they receive support.

There will be a two-tier system of social care support. Those who can afford to meet their own ‘moderate/substantial’ care needs according to the Fair Access to Care Services and then shift to maybe receive some support from the local authorities as their needs increase – and those who can’t afford to meet their own moderate and/or substantial needs who will deteriorate more quickly and reach the ‘critical’ band which will qualify them for support quicker at the cost of their health and independence.

I am trying to think of a positive to end on. It was good to hear some of the concerns about the pushing out of the personalisation agenda are being heard. It was good to see groups of social workers who want to be engaged in the process of change.  I got a good supply of pens and although I wasn’t able to nab a mug, I did get a frisbee!

I almost forgot too, that the announcement of the memorandum of understanding between BASW and the College of Social Work – great news. Long overdue in my view!

Personally, I enjoyed being able to catch up with some people I’ve known a long time, others I’ve come across before and some I’d only ever met in a ‘virtual’ capacity – thanks to Shirley Ayres, the team at RiPfA and of course, the Community Care team as well as others who will remain nameless!

Personal Budgets in Practice

Recently, I’ve been working with a service user and his carer (daughter) to put together a  support plan or rather two support plans – one for him and one for his daughter . The two live together and without his daughter’s presence, there is no doubt at all that the man, G, would be in residential care so the personal budget is relatively substantial.  G has advanced dementia. His daughter who is a strong advocate for him and a devoted carer has given  up her job in order to care for her father. She receives carers allowance which is a pitiful £55.55. Think about that – for constant care (yes, she gets respite but that is sparse and shrinking).

As for creativity with G’s support plan, it isn’t particularly, because he has quite specific personal care needs and there is no scope for much creativity regarding tasks apart from the ability to potentially employ someone from outside the usual agencies.  Oh, we can choose the time and the ‘blocks of care’ but the type of care needed is specific so we can’t ‘skip a shower one day so there’s more time for a bath the next (seriously, that was suggested in one of the training sessions I attended!)’ as health reasons determine the need for regular visits. G’s support plan is, what we call a ‘managed personal budget’. That means that a virtual budget is assigned to G and I make the arrangements for agencies to cover the specified hours. I don’t get a choice of agencies. The agencies that are employed are those that have won ‘bidding’ contests with the local authority and are party to block contracts.

This ‘counts’ as a ‘personal budget’ for the purposes of the local authorities’ ‘figures’ even though the effect is exactly the same as it was prior to the ‘personalisation agenda’ – no, wait, there is a difference. I have three times the amount of paperwork to complete. Am I working in a more ‘person-centred’ way – well, I hope that I was ALWAYs involving service users and carers in care planning. That’s not to say that direct payments haven’t been enormously liberating and positive for a lot of service users. I absolutely don’t believe that everyone should have ‘managed’ personal budgets but it is a fallacy to believe the ‘hype’ that this personalisation agenda has brought the same benefits for all service users.

So we move to the idea that Burstow promotes that all support plans should be delivered by direct payments. We discussed delivering this package via direct payments, when I promoted even a slither of interest, I invited someone from our direct payments team round to meet the family (because they can ‘sell it’ better than me and can answer all the detailed questions about implementation and finances that sometimes I can’t) and we stalled. Why? Because G’s daughter felt genuinely stressed and frightened at the thought of employing someone directly – the agencies that accept the direct payments amounts are limited and don’t include her preferred agency and if she went with the preferred agency, her father would lose vital necessary hours of care.  She has little enough time to herself as it is and spending more time managing and planning her father’s care processes was something she felt that we should be doing.

Her father has very poor cognitive functioning to the extent that communication is very difficult.  The direct payment option, was, she saw, a way to push more stress onto her as a carer.

This is a reality that some of those who are implementing the wonderful new world of everyone receiving direct payments type personal budgets really have to address.

However I do have a more positive story to follow up on. That is that she, (M’s daughter) has a carer’s personal budget for herself which is delivered via a direct payment. While I won’t go into the details about what has been provided, you’ll have to trust me on this as I say we have been able to be incredibly ‘creative’ with the support planning of the carer’s personal budget and it will have an immediate positive effect on her quality of life. So all’s well that end’s well.

Generally, I have had a lot of success with carer’s personal budgets being implemented and I think that has been because the money provided (although not very much) is money in addition to the core care needs for the cared-for person.  There is a scope for more interesting ideas of things to use the money for.

It’s hard to see how more creativity can be instilled without more money and as long as the figures allow ‘managed’ personal budgets to be ‘counted’ we won’t have a real idea of how ‘ground-breaking’ these programmes are.

I don’t know the answers to these problems – I hope some of those consultants who are paid multiples of my salary and can spend all their days in discussions and consultations are able to come up with some genuinely practical responses rather than the usual ‘try harder/work harder/involve users (as if we don’t do all this already’.

Let’s see.

And on a final unrelated point, I saw a link to this blog yesterday on Twitter. It is written by the 18 year old son of someone with Alzheimer’s and I found it excellent and insightful.

Dementia Screening

Histopathogic image of senile plaques seen in ...

Image via Wikipedia

I wrote up some reflections and thoughts about my time at the Rally and March on Saturday for Community Care and my piece can be read here.

I also wanted to comment about the proposal that the Alzheimer’s Society suggested that everyone over 75 is screened by their GP for dementia. I can see where they are coming from – there certainly needs to be a greater awareness but honestly, I’m not sure if this is the answer.

The idea of the screening is for the GP to offer a type of MMSE (mini mental state examination) test and to have a discussion with a family member/friend in conjunction with this.

Whilst I agree that awareness and early identification of dementias can and must be promoted, I’m not sure that general screening would be of as much use as the Alzheimer’s society do.

I believe it would probably be the people who are more reluctant to go to their doctors who might need the tests the most. There need to be a way of thinking through better targeting of information about dementia and what can be done for people who are diagnosed early in terms of drug therapies and lifestyle changes.

Perhaps if doctors surgeries make contact with people in that age group with whom they have had little contact for months or even years. My concern is the general screening will focus time and resources on those who are  most likely to access the services in any case.

The problem with this is that GPs surgeries are now routinely ‘deregistering’ patients if they don’t attend and don’t send back letters which ask them to confirm their address/registration with a particular surgery. This has frequently been a problem I’ve seen at work as older people who might be more forgetful or just less engaged with responding to correspondence end up without any GP at all.  I expect it happens less in smaller towns and villages where GPs know their patients better but in large cities and inner cities, it is a big problem.

It doesn’t need to be a doctor that carries out the screening tests and conversations either  – perhaps there is scope to use wider ranges of professionals – not to make diagnoses  but to refer for more extensive discussions with doctors. Perhaps you know, even social workers in adult care settings could be involved in identifying some of those people who might be better targeted or leaving information or even adding a few questions about memory and any concerns about it with the people as they call or are requested to call for assistance .

Day centre staff (where they still exist) could have some information to distribute.

General hospitals could also share information and have discussions (this could be a discrete post rather than adding further burdens on currently stressed staff).

It’s useful to look at the prevalence rates for dementia in England and Wales and it is possible to see how it increases after 75 and why this age is the point at which the tests are being proposed. Perhaps even more useful is looking at the incidence figures (new diagnoses) after 75.  It seems that if there is some type of screening it should be repeated at regular intervals rather than a one-off screening at 75.

Maybe it is the way to go. After all, the Alzheimer’s Society has much more expertise in this area than I. I just see so many people whom I know would not go to a doctor’s surgery for a test and I wonder how engaging the process could be.

Often diagnoses are arrived at by family members discussing concerns with GPs in the first place but how to ‘catch’ the diagnosis earlier? Engage those who are likely to see this section of the population and disseminate information.

Information and awareness have to be the key – get the message out that a diagnosis is the start and not the end of help.

I know there was also some discussion about whether someone would want to know if they had a diagnosis of dementia.

Would I want to know if I had a dementia diagnosis? Absolutely and without doubt yes.

I would want to be able to make plans. I would want to be able to benefit from assistance available.

I don’t think general screening is bad. I think there needs to be more thought in how it could be implemented and ultimately, any discussion about dementia on television is a good discussion.

Love

Happy Valentine's Day♥♥♥

Image by mysza831 via Flickr

One of the main themes of a lot of the work I do is around carer support. Carers Assessments, of course, but increasingly individual budgets for carers which on my own caseload at least, have shot up over the last year.

I was having this discussion with a colleague in another team about the difference emphasis that we have on some of our work, in a specialist mental health team for older adults – as opposed to the CMHT for adults of working age that she works in.

My impression is apart from the more obvious  emphasis on issues of capacity and the interdependence between deteriorating physical health and deteriorating mental health – we also provide a lot more carer support – as the client group that we work with may need more obvious care and support.

So I see a lot of carers. And I see a lot of love.

I suppose in some ways, you could say I see the manifestation of the promises made in youthful, happier times,  to stick together ‘in sickness and in health’.

It makes me reflect on the nature of love and the nature of devotion. Often I am in awe and admiration. I wonder if I could do what the people I see do. I expect it is something that we don’t and won’t know until circumstance forces us into this position.

Some of the more difficult situations to walk into happen when a deterioration in cognitive functioning leads to a husband forgetting his wife or, perhaps more painful, being violently aggressive (either physically or verbally) towards a partner he would once have put beyond anything else in the world. The change in behaviour coming from the ravaging force of a dementia can be heart-breaking to say the very least.

I know the words to say.

‘Blame the disease not the person’. It is what we say to ourselves when we are at the mercy of violently aggressive anger, hatred and scorn.

It isn’t John talking – it’s John’s illness talking.

Of course that only helps to a point because the words are still coming from John’s mouth, with John’s accent. They are directed towards his wife, who is sitting next to help, gently sobbing, while trying to pacify and ease some of the venomous words.

It isn’t John – it’s John’s illness talking.

Sometimes it feels so shallow.

Last week, I was involved with a family whose current situation was tragic in the first order. I won’t recount the details so you will just have to trust me on this. I was speaking to one of the daughters. She explained to me the situation whereby both of her parents were very unwell in very different ways. Both had to be admitted to hospital.

I said to her that I was sorry for what was happening to her and her family. I couldn’t pretend to understand how it felt for her and her brothers and sisters to be in that situation but I was sorry, all the same.

It seemed so shallow just saying the words. So empty. I haven’t been faced with those levels of tragedy in my life and can’t imagine how it would feel so in that sense it was definitely authentic.

She cried. I listened. Later, I met her brother. Her brother cried. He tried not to. He is a young man. I suspect he was not used to crying. I said I could understand his tears.  I could.

I see a lot of love in my line of work. Often it is veiled with tragedy. Tragedy of deteriorating health or forgotten moments, even forgotten names.

It has given me a different and much deeper understanding of the nature of love within a family and the nature of relationships that we forge and build through our lives and what happens when the health we presume will always be there, begins to fail.

In sickness and in health. I suppose most people think about physical sickness. Sickness is temporary, we recover. Some types of mental illness, progressive dementias, that isn’t so easy to recover from. Sometimes the scars left take much longer to heal. Recovery is always a goal but it is about recovering relationships as well as health.

The human spirit is a remarkable thing. Love is a remarkable thing and so are the ties that bind all sorts of different kinds of families together.

Love doesn’t have to be obvious. It isn’t always explicitly stated and sometimes it is the more subtle elements that remain stronger.

I’m not a great fan of St Valentine’s Day. I find it too cloying and commercialised. My partner and I haven’t bought each other presents or cards. We might have the first couple of years we were together but it has just tailed off a bit as we both realised it was about matching the expectations of others about ‘celebrating St Valentine’s Day’ rather than any expectations we had of each other. I think we are going to get a takeaway tonight to eat at home in front of the television.

Outward displays of ostentatious love have little bearing on the internal nature of the quality of the Platonic Form of Love. They are just shadows and presentations.

Love is about what families do for each other. It is not measured in cards, flowers and chocolates and if we, as a society want to value love, we need to value carers. We need to value love.

One day, it will be all of us.

My message for St Valentine’s Day? Look around you. Look around at the people you love and the people who love you. Not just partners, but family, friends, neighbours, pets.  Appreciate it and appreciate them.

But then, that isn’t just a message for February 14th, that’s a message for every day.

Hospital Discharges or the Lack of Them

I’ve written a few times about some of the difficulties about managing and organising discharges from hospital so forgive me for reiterating previously presented points but I couldn’t resist because  there’s an article about it in The Guardian who commissioned a survey of doctors. ‘Bed blocking’ refers to difficulties in discharging patients home from hospital for various reasons when they are ‘medically fit’ to go home.

251 (50%) said the problem known as “bed blocking” – which costs the NHS tens of millions of pounds a year and forces needier patients to wait on trolleys – was worse now than a year ago, while 200 (40%) said it had not improved.

The poll was conducted for the Guardian by Doctors.net.uk, an online professional network to which 90% of UK medics belong.

My bed

I’ve previously mentioned my distaste for the term ‘bed blocking’. I continue to hold that view. It seems to create a sense of misplaced guilt. There is a much longer term failing of systems that leads to this problem and there are often genuine fears, risks and complications that make discharges more difficult than initially presumed.

Having been on the end of many countless angry telephone calls from doctors and nurses about ‘my patients blocking their beds’ – and – please forgive me if I repeat an oft-spoken personal anecdote – having heard a doctor actually blast off to a patient about the cost of keeping her in hospital (it may have been a valid point but it shouldn’t have been made on a ward with other patients within earshot), I think it didn’t need a survey to know that things are getting worse.

For me, the problem lies with higher initial criteria for accessing lower level support at home and the increased charges.  The removal of virtually all preventative services will lead to a higher strain in acute services.

I just wonder where the 10% who thought the problem had improved came from.

It’s obvious that a reduction of the eligibility criteria (FACs) will lead to more people not being entitled to care at home. The other, perhaps more important aspect is the increases in fees that local authorities are charging for care. Some people just don’t think they should be paying for care and there is a mentality that grew up with the establishment of the welfare state that believes absolutely in the ‘I’ve paid in so I should be able to take out when I need’ that resents paying for what is needed.

I’m not making a moral judgement about that, by the way. I absolutely support a social ‘trampoline’ that sits underneath us to not only catch us when we fall, but to help us bounce back up to a level that allows us all to participate in society at a dignified level.

Going back to the Guardian article

One respondent to the survey said patients with severe dementia were spending months in beds intended for those with acute medical problems because the NHS does not have enough places in wards specialising in dementia care. Another said that as many as 80% of the patients they see on an elderly ward “are fit to leave an acute bed but there is nowhere else to go”.

I can think of many examples from my own caseloads and certainly on my teams’ caseloads which concur with these statements. Far worse though are the months spent in psychiatric hotels when no suitable placements have been found. We have a serious shortage of beds not helped (obviously!) by a few wards which had specifically cared for older adults being closed down in a money-saving rush. Money saving? It all spills over. Now there is nowhere to transfer some of those patients in the general hospitals. There are people who need hospital admissions who cannot access beds or are placed on inappropriate wards. It costs a lot.

While there are initiatives that have helped ease some of these problems – the re-enablement service that provides a spike of (yes, free) home care support to help someone in the weeks out of hospital and the provision of both interim and intermediate short term residential and nursing placements while a solution to find someone either a longer term placement or some rehab to get them home.

Neither of these services in our area at least, have been sufficiently tailored to people with dementia. There is a general wider feeling in general services that when someone has dementia they may not be able to get the most from a rehab service.

This is my concern about Lansley’s push into promoting intermediate care and speeding up hospital discharges.

The Department of Health said it was making an extra £162m available between now and the start of April to help patients leave hospital sooner and live independently at home. “It’s really important, particularly at this time of year, that we help people to leave hospital as quickly as they can, when they are ready. The latest figures show that 2,575 beds are unavailable due to delayed transfers of care,” said Andrew Lansley, the health secretary.The money is intended to free up hospital beds by helping older people get more support before and after they leave and to reduce the high number who return to hospital soon after discharge.

The problem in my eyes, and yes, I accept that I see a particular area of social care in focus due to the nature of my job , is that not everyone can live independently at home and there is a lack of good quality local placements which has as much led to a delay in discharge. Subsidising home care for six weeks just masks the issue that people are being asked to pay for their own home care in the longer term. Sometimes the issues relate to unsuitability of housing and no-one can sit out a housing waiting list in a hospital – nor can the intermediate or interim beds accommodate them.

Locally, I can say absolutely that we need more resources available to people with dementia. We need wider work on understanding and supporting people with dementia by care staff. It isn’t an easy job and a lot of people don’t necessarily want to do it – especially at minimum wage and poor contractual terms.

I think the government’s NHS ‘efficiency’ savings may come unstuck by failing to comprehend the links and costs between health and social care. There’s been a perfunctory nod in the direction of social care by the ‘additional money promised’ by the Health Secretary and Care Services Minister  but anyone who thinks that that money will be safe in the face of cuts and non-ring fenced local authority spending is living on a different planet.

It isn’t good. It isn’t looking good. No matter what Lansley says to people who don’t see this situation every single day and whom he manages to fool (indeed, maybe he has fooled himself and truly believes his own figures), things are not going to get better.

And from someone who desperately wants to be an optimist at heart, it’s difficult for me to say that.

The Sailor

H.M.S. Medway

Image by Adelaide Archivist via Flickr

Last week, I went to see an elderly man who has dementia. I’ve known him for a couple of years and have seen the progression of this dementia. Sometimes the progression happens at different rates. We’ve had a lot of time to chat, over the past couple of years though.

I visited him in the residential home in which he is now placed, where he said he never wanted to end up a couple of years ago.

Circumstances change though. No, it doesn’t feel good, it doesn’t feel comfortable but it is right for him now. He needs 24 hour care.

When I met him, it was to be our final meeting. The six-week placement review meeting. He occasionally remembers me as I’ve visited him more recently but this time the deterioration in his mental state was palpable and it cut like a knife.

As it was obvious my rudimentary questions were going over his head, the standard ‘Do you know what city this is?’.

His eyes flashed with grief and he drew a quiet ‘You know, I can’t quite remember’ From a proud and native Londoner, that dampened my heart.

I switched the conversation back to something I was sure he would want to talk about. He had proudly served in the Royal Navy during the war and the immediate years afterwards.

‘So tell me, was it the Merchant Navy or the Royal Navy you were serving in?’, I said ‘I can’t quite remember’.

His eyes lit up. ‘The ROYAL Navy’, he gruffly confirmed.

‘Tell me about your time in the Navy’, I prompted him with my memories of some of the stories he had told me.

‘Ah yes,’ he said, and proceeded to the very familiar stories that he had always enjoyed telling. About the war, about being one of the few to survive a number of sea assaults. About the people on his ship who had been killed. About his friends who returned and his friends who didn’t. About how he had pretended he was older than he was because he wanted to enlist at the start of the Second World War back in 1939.

But even these stories, which I had heard hundreds of times, were vaguer in the details. Sometimes I found myself prompting him and filling them in.

The conversation made him happy but it made me resolutely aware of the nature of memories and how they form who we are.

As I looked around his room in the residential care home which is filled with photographs of family, favourite paintings from home, I pondered at the brief echo of his life and sense of being that remains.

I picked up a photograph of him with his wife who died a couple of years ago. They had been married for over 40 years.

‘Who’s this?’ I said, first pointing at him.

‘That’s me’, he said, and he looked at me as if I had completely lost it. I smiled and nodded ‘of course it is’.

‘And who’s this woman?’ I said, pointing at his wife.

‘That’s Mary,’ he said, his voice softening. ‘She’s a fine woman. The best. I would have married her’. He stopped for a moment and it was as if his thoughts had caught up with him. He looked at me with stronger resolution and said quietly ‘I think I did’.

I looked at the fading picture of the couple who had raised a family together.

This spark of life and increasingly vague recollection that continues to hold on in the face of the loss of everything that might be related to the sense of self we have is what always grips me. He had, over the years, shared his memories of battles and wars long gone – of times that would never return and of a world that is slowly but surely slipping away. I don’t have any remaining parents or grandparents. When I heard their stories of the war I was young enough to think little of it and not realise, perhaps, the enormity of the changes that had happened in the world since they were young .

I feel honoured to be able to share and hold some of the recollections of those people with whom I work and it has enabled me to build up a strong picture of a London and Londoners both native and from all corners of world and the people that have inhabited this city and this country over the decades.

When the memories fly away, it is the family, friends and yes, even the grumpy social workers who will keep a hold of those memories and draw on them.

He thanked me as a I left and I thanked him.

‘Thank you’, I said and I meant it with all my heart.  Knowing him and working with and alongside him has made me a richer person and has granted me the gift of deeper understanding of who he is but also who we are as people.

This is why I love my job and that’s why I despair at some of the changes in social work that push contact time to the minimum. This job is best and most effective when the relationships can build and grew and can be built over time.

So when I go to review someone in a residential home, I know who they are and who they were. I know the individual from more than a piece of paper. Sometimes it is not possible of course, fast work needs to be done and the pressures of the job increase to the extent that these conversations about the past, the so-called idle chats about memories, might be lost in favour of task-based visits. Visit to assess. Visit to review. Rarely does ‘visit to build and develop a relationship and sense of identity of this person from their own mouth over a longer term period’ count on statistics.

It’s easy to see where the better service would lie but this is the price to be paid by the cuts in staffing.