Commissioning

Yesterday, I caught up with a friend of mine whom I hadn’t seen for a few months. She works in commissioning. She didn’t work in commissioning when we first met but her career trajectory has taken a few odd side steps and there she is.

We talked about commissioning for a while. She doesn’t work in a part of commissioning that affects the services that would be delivered by my part of the service so I felt fairly safe moving into rant mode as I spoke to her.

I wondered, to her, why the process of commissioning is so far removed from the frontline service delivery.

But there are service user consultations, she added. Yes, I replied but they are narrow in scope and where are the voices of those who do not ‘self-select’ themselves on ‘panels’. Where are the voices of those who may not have the capacity to make some of the decisions related to their care needs? Where are the voices of the carers who don’t actually have the ability to leave their homes because of the lack of appropriate respite – particularly older carers? Where are the voices of the voiceless?

She had a good comeback of course and spoke to me about the reams of additional advocacy support she is involved with but it made my heart sink.

You see, all advocacy apart from statutory IMCAs (Independent Mental Capacity Advocates) and IMHAs (Independent Mental Health Advocates) have been withdrawn from the services that I work in. The voluntary sector agencies that might have helped have either been axed or cut back sufficiently that they won’t ‘work with’ people who enter our services.

But back to the commissioners. I wonder why I didn’t know the name of any of the people involved in commissioning services for our local authority in the user group I work with. Why don’t they come to our team and meet with us and talk to us, I suggested to my friend, while, of course, absolving her personally – I know she is both good at her job and dedicated to providing good quality services.

Surely we, who are involved in scoping out support plans, making suggestions about which care agencies might be better than others, we who receive the day to day complaints when services aren’t available or aren’t working, would be useful people for commissioners to engage with? But I don’t even know the names of the people who work in commissioning the services we are asked to use.

They make block contracts on the basis of cost which deliver poorly. Yet when renewal time came around, exactly the same contracts were dished out. Perhaps we should meet and discuss our respective jobs a little more often.

I feel angry towards the unnamed commissioners in our service. I feel angry because they drop services on us which are basically unsuitable but cheap. They say they ‘consult’ but as I have learnt over my time in the job, ‘consult’ does not mean discuss, it means tell.

I wonder how many of these faceless ‘commissioners’ would be happy to stand alongside me in a hospital as I tell a family they will have to travel miles each way to visit their parent in a residential home because we have nothing available locally. Or stand next to me as I apologise, in my role as a corporate ‘entity’ because the provision of respite which was promised is wholly unsuitable because its all we have to offer.  Or listen to the conversations I have to take about carers rushed off their feet because they are limited to these ‘15 minute’ pop-in visits to desperately lonely people or listen to the discussions about why we no longer do a hot meals on wheels service and deliver only microwaveable meals. Occasionally, I’ve been known to tap out a grumbly email to ‘commissioning’ about particular services – and why I think they work or what I think is lacking – simply because I am not sure what other action to take and I want to ‘do something’. I’ve never really had anything other than perfunctory responses. They seem to exist in a parallel universe of contracts and submissions and plans.

Who was consulted before these commissioning decisions were made? I’m sure people were. Or were they? What backgrounds to ‘commissioners’ have in human services – I honestly don’t know. I don’t know if they have ever had any professional expertise in the areas that they commission for or have just moved up through various administrative ranks without any frontline experience.

I know ‘back office’ is important. I know there are some people that need to commission services. I understand that. I just wish sometimes I knew who they were and the ways that they made their decisions. I wish sometimes they would show their collective faces in our offices to understand better the implications of the decisions they make.

I’m very far from an expert in organisational systems but surely it can only help when different parts of a ‘group’ come to know each other face to face through discussion and understanding rather than the continual barriers that are put up between us by people who feel it necessary to stay in their safe silos.

I don’t want to mistrust commissioners. I just want to know who they are. More importantly, I want to know they understand the effect of their decisions on the people I see every day.

Safeguarding Adults Awareness Week

I learnt from my Twitter stream (thanks to Lindsay_Pike) that as well as being Carers’ Week, this week is also ‘Safeguarding Adults Awareness Week’.  I had never come across this as a ‘week’ before so used my carefully honed research skills to type ‘Safeguarding Adults Awareness Week’ into Google to see what it might be about.

There seem to be some local events arranged in Windsor, Kent and a nice sand sculpture in Cornwall as well as other places, it had certainly completely passed me by.

While the very scientific poll undertaken in Rotherham on the site of the councillor who was promoting it says that

76 % of the people surveyed were aware of safeguarding. A similar survey two weeks ago showed 54% recognition. The campaign of posters on the back of buses had been particularly successful.

I wonder if this ‘week’ though is truly ‘national’ and how important awareness is to identification and work to fight against abuse of adults who might be at risk of abuse.

There is a vast chasm between awareness of abuse towards adults and children – for me the division is arbitrary at best. Abuse of a person with knowledge/power/influence towards someone who lacks the ability – cognitive/physical or emotional to guard against it should be tackled regardless of the age of the so-called ‘victim’.

Why should society deal differently with the perpetrator according to the age of the person who is abused if the power differential is equivalent?

This is why I find the divisions and differences between the way that safeguarding is managed in childrens and adults services so different.

There are a lot of assumptions made though in the world of safeguarding. One is that anyone ‘old’ or anyone ‘disabled’ is automatically a s0-called ‘vulnerable’ adult. That isn’t necessarily the case.

But when someone who is at risk of being abused is – the responses from all parties can be patchy.

Perhaps that is why there is a differential in the way that safeguarding is investigated – the determination of being at risk is more straightforward with children because there are clear age boundaries to guide when an action is abuse and when it isn’t.

With adults, it is a value judgement about capacity and power relationships and that loaded word that I can’t quite find a perfect replacement for – vulnerability.

What makes one adult more vulnerable to abuse than another and is there a continuum of vulnerability that can cloud the way investigations are dealt with? In some situations it is brutally clear – Winterbourne View, for example, but when an historically abusive relationship between a husband who is physically violent towards his wife progresses as she develops dementia – at what point does it become an issue for social services to step in?

Between two ‘capacitious’ adults where there are no children involved, this would not be a situation for social services. With a progressive dementia or other vulnerability, it does.

For me, this is a very live issue as I work with a few people who have historically been in abusive relationships and when we intervene and when we are able to intervene becomes a very key judgement in a safeguarding investigation.

The key issues of human autonomy and human rights come into play in so many of the judgements we make regarding decisions of when and how to investigate safeguarding issues and what is and is not a safeguarding issue.

For me, I find I relate much more to the philosophical tenets of rights, responsibilities and ethics as I try and fit together the marginal decisions and the importance that an assessment of capacity can have on the life of another. The ability to reflect on the day to day decisions that might otherwise be taken speedily become more evident and more clear.

I can’t escape of the heavy moral responsibility that I feel in my day to day work. Every decision I make about prioritising, about capacity and in much clearer terms about hospital admissions weigh increasingly with the thought of implication, choice, rights and outcomes.

A thoughtless and unexamined practitioner is a dangerous practitioner.

Sometimes we can choose to overcomplicate and overanalyse but without consideration we can forget the power that we have.

So this week of Safeguarding has more or less passed me by but it is something that I’ll ponder on for much more than a week. I hope that next years’ week, if it exists, has some more thought and coherence behind it (and that it doesn’t coincide with Carers’ Week!).

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.

Cuts – a personal tale

A couple of weeks ago, I had one of those deeply depressing moments that will generally punctuate a career in social care.

I had to go and tell a woman, who cares for her mother with enormous patience and dignity, that we could not increase their personal budget although her mother’s care needs had grown.

I suppose I went to my manager in a relaxed almost casual way and explained how the needs of the older woman had changed and to ensure her well-being, she needed additional time.

I was told, with a degree of equal sadness and regret that there would be no increase. If we were to provide what I felt was a necessary increase in care, the time had to be taken from the the hours already allocated.

She did, to her credit, try to have a discussion about this with her own manager but there was no budging on budgets. Despite the change in various situations, there would be no extra money. In fact, she added, the plan really needed to be cut.

It had been my first personal budget implemented. The council, in an attempt to encourage and prod us to implement these personal budgets had promised us and by extension, the service users and carers we work with, that no-one would be disadvantaged by moving to a personal budget so even if the RAS (resource allocation system – the way that figures are attached to needs through the personal budgets  system) did not ‘deliver’ enough money to provide an equivalent package of care that had been delivered under the ‘old’ system – it would not be reduced (and here’s the key) at least, not initially.

Now this particular service user and her daughter had what was a high package of care. It had costed much  more than the ‘RAS’ had spat out.

After making the promises, after the move to personal budgets is no longer an optional roll out of volunteers – the cuts are coming.  There is no longer the carrot to offer of ‘equivalent packages of care’ because we now offer everyone as a matter of course a personal budget and those who were not receiving them are being transferred over to the new system regardless – they don’t have to be self-managed, of course, but they have to exist.

So I visited the family and we looked at ways of shifting around hours.

The hours that were cut were the respite hours.

I suppose it was inevitable.

Family carers are invisible. The work they do is not costed. Of course the daughter was sacrificing her own needs for a few hours respite to her mother’s needs for additional personal care.

This is what the cuts mean to one family.

I had to tell them and negotiate with them about what to cut from their own package of care.

Not the Prime Minister. Not the Millionaires in the cabinet. Not any elected politician or Council Chief Executive. No councillor had to sit in that room with me and look the service user and carer in the face and ask them what they would prefer to give up from their package of care.

I’ve known this family for many years. I have a good understanding what is at stake for them and how much these cuts are hurting. I also know they won’t complain or grumble or shout from the rooftops.

They are not going to be going on any rallies or demonstrations against the cuts – not least because the respite hours have been cut.

We who can, have to demonstrate and shout and scream on their behalf.

And you know, as I know and I say this with a heavy heart – they’ll be much more of this to come.

Respite, Disability and Personal Budgets.

Rivan Vincent has been prominent in the news over the last day or so.  She has a six year old daughter, Celyn, who has quadriplegic cerebral palsy and epilepsy. In the face of additional respite services being denied to her, she expressed her frustration on a Mumsnet forum stating she had asked social services to take her daughter into care because she could not cope anymore.

From this forum post, a campaign was generated which has led to coverage in many national papers.  The Mail, The Guardian, The Telegraph, the Mirror, The Independent,  – they all cover the story.

All, quite rightly broadening the debate to concentrate on the wider issue of access to respite for those who care for people (particularly children) with disabilities has had welcome ‘column space’ in the news agenda.

I really hope that Ms Vincent does receive the additional support she needs and it is possible she will due to the intervention of the Prime Minister in her case.

What I hope, far more, is that the debate is continued and that it is not only Ms Vincent, and not only the carers of children with disabilities that benefit from this flash of publicity.

I am concerned that the government have batted back criticism of their promises to promote respite by claiming that they are pushing extra money into these services.

An extra £800m apparently. Not ring-fenced. Going to local authorities. So in effect, it is money that is going to be swallowed up with other care costs and the government can claim the moral high ground – but pushing an additional £800 million into respite care while taking hundreds of millions of pounds from local authorities in other areas doesn’t really cut mustard, so to speak.

I wonder how long it will take for the government to blame local authorities for not providing care services. Not too long.

The Telegraph leader which urges us not to blame Downing Street for these matters

South Gloucestershire council, not Downing Street, has declined Mrs Vincent’s request. No doubt its social services budget has been cut – but is there no money to be saved elsewhere? The council’s website is heavy with the jargon of environmentalism and diversity. Perhaps its “equalities team” could be slimmed down to free up money for Celyn. And perhaps other local authorities should start dismantling similar initiatives before cutting front-line services and putting the blame on the Government.

So we see the rub. It is the council that is spending things on anything that isn’t ‘front-line’ that is ‘to blame’ for the current situation.

For me, it’s important this opportunity isn’t lost to create more interest and focus on the role that carers play not just carers of children with disabilities but all carers. If the government really wanted to help more broadly, they could look at the insult which is Carers Allowance. That would put more money in the hands of carers.

The problem is that for every Celyn who has public focus, there are hundreds of thousands who don’t have the same media access and spotlight. Saying that it is important that this becomes and remains an issue in the public consciousness.

The fact is, it comes down to money. Better care costs.

It also seems almost woefully ironic that in the face of cuts to Disability Living Allowance and Employment and Support Allowance, the government seems to have found a conscience for disabled children.

Cameron would be as good to remember that children grow up and continue to need support and continue to face higher costs of living than people who do not have disabilities.

There’s an article on the  Guardian’s website from the mother of a disabled child, who writes, in the context of her frustration about the process of assessment by social workers

Instead of strangers with clipboards, the first stage in an assessment could be made by the disabled person themselves. My daughter could have been asked to keep a detailed diary of what she did and what she needed help with. It needn’t be written down; it could be recorded or dictated. This would allow her to paint a rich portrait of her teenage life, which includes going out to see The King’s Speech with friends, as well as someone helping her on and off the toilet.

This baffled me because that is exactly what is and has been happening through the roll out of personal budgets and self-assessment questionnaires. People DO write their own assessments now. They shouldn’t need to be written. They can be recorded, drawn, dictated – that is what we were promised in theory.  This is exactly what the Putting People First agenda should be doing and encouraging – instead of generating a whole new pile of forms.

This week I had to have a couple of support plans for users of  Personal Budgets approved. They were both for older adults with dementia who unfortunately were not able to take as full a role in the decision process as would be ideal due to a lack of understanding, however, I spoke extensively to family members and gained a good feel for the situations at hand and provided advice as to what I felt might be useful.

Family members while involved felt confused by some of the details so I tried to simplify as much as I could.

Infuriated by the paperwork, I pushed my ‘forms’ to one side and wrote out the support plan that we had discussed extensively on just a plain piece of paper. I was frustrated by the level of repetition that was expected of me.

After all, I remember training I had been on about wonderfully creative support plans and all the nodding and smiling about that’s what we should be using. Let’s work in new ways and break out of local authority mentality.

I took my ‘new style’ paperwork which involved just free form writing. No questions answered.  No exposition about what could or could not be done.  My manager thought I was having a joke with her and I responded, no, I hadn’t filled out ‘x’ form or ‘y’ form. This was the support plan that I was presenting.  They nodded and agreed.  Then told me to copy out all the information into one of the local authority forms.

I did because if I hadn’t the services might not have been provided in the same way and to be honest, it didn’t take me too long but it is indicative of the type of way that people have been working for so long.  This happened to me two days ago.

Local authorities have had lots of ring-fenced money to promote the shift to personal budgets. I think some of the focus and project management has been aimed at wasting as much of that money as possible.

We are left with systems that are barely shadows of what they could have been. Sure, they work fantastically for some people but the rest have to pick up the dregs that are left behind.

Hopeful thoughts  for the day.

a) It’s Friday

b) Ms Vincent’s desperation and plight will lead to greater insight and better services for all disabled adults and children and their carers.

Love and Death

At 8.58am yesterday I was just about arriving at work and Mr A’s death was certified. I didn’t know about it though. I didn’t know until about half an hour later because Mrs A’s carer had arrived at 8am that morning and had found Mrs A in a distressed state because she couldn’t rouse her husband.

image

When the care agency phoned to tell me about the recent death, a lot of thoughts raced through my mind. Firstly, Mr A was relatively young – late 60s. I had been to visit Mr and Mrs A last thing on Friday. Secondly my thoughts flitted to Mrs A. She needed pretty much constant care. We have a substantial care package as it is but there wasn’t any way we’d be able to leave her alone. Her upset and distress as well were to the forefront. It was a content and companionable second marriage for Mrs A after a first marriage marked by great tragedy and significant abuse.

So I made a few phone calls to explore possibilities of placement. There was a bed available on one of the wards but fortunately, there was also a bed available at a nursing home where Mrs A had been for respite care – they knew her – they knew Mr A. They could accept her immediately. More telephone calls for transport. Oh, and the animal warden.

And so, just over an hour after an official certification of death, I arrived at the flat. The police were still present as they were waiting for an undertaker to arrive. So I sat with Mrs A and the corpse of her husband all morning.

It was hard to ignore the body, although it was covered. The flat was warm, the photographs were plastered all over the walls. One cat mewed around our feet – the other we think, was too curious about the body in the next room.

The police flitted in and out – checking identities, trying to find out information. Mrs A cried. She has a fairly advanced dementia, but she cried. She sat in her wheelchair and cried. There was an absolute awareness – although I had been told by the police on my arrival that she was confused and therefore didn’t know what was going on. She certainly did when I spoke to her. She told me about not being able to wake her husband. Just as had happened with her first husband. In the same flat.  She pointed to the fruit in the bowl that Mr A had bought for her the previous evening. And the other things he had done for her.

For he had done a massive amount for her. My first meeting was in hospital when trying to arrange a return home for her. He came to the hospital every day and sat with her through the entire visiting period. Devotion was an understatement. And for Mrs A, her eyes quite literally lit up when she saw him and when she spoke about him. When making a plea for a return home over the more favoured move to residential care, it was the relationship with Mr A that sealed it. Her clear joy at being with and around him. I think it almost moved me to tears as I explained in probably over sentimental ways to the funding panel the need for a return home for Mrs A. Against most of the advice of the hospital.

I have done some courses in bereavement counselling. Granted it was years ago and you draw on what you can. But I’m not sure about those moments, minutes and hours after a death. But I sat with her. I held her hand when I couldn’t think of what to say. Most of the time, I didn’t say anything except an explanation of what we had arranged. We both knew she wouldn’t be returning to the home.

A neighbour who had seen the police and ambulance arrive popped by. He spoke to the police at length as he had known the couple well. I’d met him before in other circumstances. Another neighbour offered to take the cats. Which was fortunate because the animal warden wasn’t being very good at returning telephone calls.

I travelled with Mrs A to the nursing home. The police stayed on at the flat, still waiting for the undertaker. When we arrived,  the care staff and residents at the nursing home who knew her from the respite recognised her. There was a lot of hugging. And more than a few tears. They all knew Mr A too, because even during the respite, he had visited daily. He was a cheerful and affable man who would never pass anyone without a greeting.

It was an out of borough placement so by the time I got back to the locality, I just about made my 4pm visit with minutes to spare. I held it together through that hour – fortunately, it was a joint visit with a colleague. I told her to lead on it.

Today, I go back to the flat and then to Mrs A with some clothes. We hadn’t been able to take any because the position of the body had barred access to the wardrobe.

So just after 5pm yesterday,  having left my desk just before 10am that morning without having been back to the office, I got on the bus home. And I started to cry. Not the full-blown sobbing or even the, I’m ashamed to say, more common stress-induced tears of frustration , but more the occasional tear forming, kind of crying. I wasn’t sure what exactly I was crying for.

The uncertainty and unfairness of life and death I think and of a man and a woman who loved each other so much when neither had any other family, but they had created a relationship from loneliness that had added so much joy to both.

He was a good man. The police found no trace of any family. He never spoke of any family except Mrs A.  The neighbours told me that he was well-loved in the community and that doesn’t surprise me. The coroner was given my details as a contact for Mrs A though, so I can be informed about the autopsy and funeral.