Neary, Hillingdon and Best Interests Assessments

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The judgement in the case of Stephen Neary was published yesterday. I  held off commenting about the case when it first hit the press because sometimes I feel there is a lack of detail and an overwhelming presence of misunderstanding in relation to reporting about the Court of Protection and the Deprivation of Liberty Safeguards (DoLs).

Now that the Court has made it’s decision and published it’s judgement, I feel a little better able to comment and assess.

I haven’t read the judgement in great detail and have no doubt that I’ll come back to this over the weekend  but I wanted to share and explore some of my initial thoughts about it.

Steven  Neary is a man who is autistic and who was living with his father, Mark,  in the London Borough of Hillingdon. He was receiving extensive support from the local adult services department. Steven was placed in respite care and the borough felt that it was in his best interests to remain at the support unit where he was receiving respite care although his father wanted him to return home. A number of deprivation of liberty orders were made for the period between April to December 2010, which enabled Hillingdon to keep Steven at the support unit (the council claimed that between January and April Steven’s father consented and/or he was not being ‘deprived of his liberty).

The Court found against the Council that Steven had been unlawfully detained by the council between January and December 2010 and had been deprived of his liberty for the entire time with the ‘authorisations’ that the council had granted themselves being deemed to be ‘invalid’.

The other points that the judgement picks up are that the first referral to an IMCA (Independent Mental Capacity Advocate) came in October 2010 and that the matter was only referred to the Court of Protection in October – both of which denied a speedier resolution to this period of detention for Steven.

There are some interesting and useful statements which are given in the judgement.

Firstly the judge condemns Hillingdon for using the DoLs to impose their decisions on the family which goes against the spirit of the Mental Capacity Act 2005 saying

The DOL scheme is an important safeguard against arbitrary detention. Where stringent conditions are met, it allows a managing authority to deprive a person of liberty at a particular place. It is not to be used by a local authority as a means of getting its own way on the question of whether it is in the person’s best interests to be in the place at all. Using the DOL regime in that way turns the spirit of the Mental Capacity Act 2005 on its head, with a code designed to protect the liberty of vulnerable people being used instead as an instrument of confinement. In this case, far from being a safeguard, the way in which the DOL process was used masked the real deprivation of liberty, which was the refusal to allow Steven to go home.

And both crucially and importantly for Supervisory Bodies (who are the PCTs and the Local Authorities) comes this guidance

The granting of DOL standard authorisations is a matter for the local authority in its role as a supervisory body. The responsibilities of a supervisory body, correctly understood, require it to scrutinise the assessment it receives with independence and a degree of care that is appropriate to the seriousness of the decision and to the circumstances of the individual case that are or should be known to it. Where, as here, a supervisory body grants authorisations on the basis of perfunctory scrutiny of superficial best interests assessments, it cannot expect the authorisations to be legally valid.

So this places a consideration on the decision makers or ‘signatories’ at the supervisory bodies to do more than sign. My assumption, as a Best Interests Assessor was that the assessments I send to a Supervisory Body were actually discussed between ‘decision-makers’. Maybe I’m hopelessly naive but I always assumed my assessments were not automatically ‘signed off’.

One of the things I have picked out from the reading through the judgement is the lack of experience and understanding about the DoLs procedure that seemed to be widespread. The judgement explains

He (Mr Neary)then began a dialogue with the social worker about this, which was a learning experience for them both, as neither had any experience of the procedures

It’s a shame that there is so little experience of the procedures by professionals and it indicates (although perhaps I am reading too much into this sentence) the broader misunderstandings that are created by lack of knowledge of new processes.

Later the first Best Interests Assessment recommends

involving an Independent Mental Capacity Advocate (IMCA). The report recommended that four conditions be attached to the authorisation, among them: “(1) Consideration to be given to the most appropriate place in which to provide ongoing care to meet [Steven’s] needs, (2) Consideration be given to referral to IMCA services to act as an independent advocate for [Steven].”

And of this first Best Interest Assessment, the judge says

The standard form used for the report specifically states: “You must consider whether any care or treatment the person needs can be provided effectively in a way that is less restrictive of their rights and freedom of action.” and makes reference to paragraph 4.61 of the DOL safeguards Code of Practice, which refers to the question of “what other care options there are which could avoid a deprivation of liberty”. It would not be right to be unduly critical of her report, particularly as it was the first DOL best interests assessment she had undertaken. She flagged up what became known during the hearing as “the elephant in the room”, which was whether Steven should be at the support unit at all. However, she did not follow up on this. She does not refer to the alternative of a return home as being an obviously less restrictive alternative. Nor does she refer to Steven’s unhappiness at being in the support unit. Nor did she propose an application to court as a condition of the authorisation.

For me, as a Best Interests Assessor these points are crucial in ensuring that least restrictive options remain at the forefront during my assessments.

Of the Second Best Interests Assessment, the judge is more scathing.

The judgement indicates that in June 2010 (as the first DoL was authorised for three months)

A different best interests assessor (BIA2) consulted Mr Neary . He describes her telephoning him at lunchtime for 10 minutes, saying that she had to file her report by 3 p.m.

It’s hardly a full and extensive discussion and for a standard authorisation of a Deprivation of Liberty there is a fairly generous time scale (21 days) allowed to complete assessments – it certainly shouldn’t need to be done in such haste.

In fact this is what the judge says about the report

I have not heard evidence from BIA2, but I have read her assessment. She recommends a three month period for deprivation of liberty. Substantial parts of her short report are cut and pasted from the previous best interests report. She appears to have had cursory contact with Steven on 21 June, the date her report was filed (even though it is unaccountably signed on 18 June). No reference is made to his wishes and feelings. No reference is made to Mr Neary ‘s opposition to the placement. On the contrary, the following appears: “I understand from my conversation with Mr M Neary  that he believes the current care plan is positively supporting his son and his transitional programme.” No reference is made to the possibility of a placement at home alleviating the need for a deprivation of liberty. The recommendation is made for two conditions to be attached, one of which suggests that the three outstanding risk assessments for Steven’s activities should be completed within eight weeks (in the context of a three-month deprivation recommendation). No reference is made to the absence of an IMCA, despite the condition in the previous standard authorisation, nor to the Court of Protection, despite the references in the previous assessment. I regret to say that the report has all the hallmarks of a document completed in a hurry.

Of the third authorisation, the judge notes

On 20 September, the third standard authorisation was granted by the Director for a period of two months. The authorisation makes no reference to Steven’s wishes or those of his father, nor to the possibility that deprivation of liberty would not be involved if he was at home. The purpose of the standard authorisation is described as being for Steven to receive a structured programme to contain his behaviour. Conditions were attached requiring risk assessments of all venues before Steven could undertake activities outside the unit. Consideration was to be given to an appropriate long-term placement.

The best interests assessment, by a third assessor, BIA3, refers to Mr Neary‘s disagreement with the placement and recommends recourse to the Court of Protection as a condition. BIA3 also noted that an IMCA had been requested.

These issues were addressed far too late. Steven returned home in December following a court order.

So where does this leave the DoLs process. I think some of the more useful parts of the judgement relate to an explanation of why Steven was being deprived of his liberty (in legal terms) and what amounts to a deprivation of liberty. We (Best Interests Assessors) have to rely on case law to help us pick together when a deprivation is occurring so it is useful to have further guidance.

The judge also states that the supervisory body should consider further the contents of the assessments it receives rather than just rubber-stamping them.

Although the framework of the Act requires the supervising body to commission a number of paper assessments before granting a standard authorisation, the best interests assessment is anything but a routine piece of paperwork. Properly viewed, it should be seen as a cornerstone of the protection that the DOL safeguards offer to people facing deprivation of liberty if they are to be effective as safeguards at all.

The corollary of this, in my view, is that the supervisory body that receives the best interests assessment must actively supervise the process by scrutinising the assessment with independence and with a degree of care that is appropriate to the seriousness of the decision and the circumstances of the individual case that are or should be known to it.

Paragraph 50 provides that a supervisory body must give a standard authorisation if all assessments are positive. This obligation must be read in the light of the overall scheme of the schedule, which cannot be to require the supervisory body to grant an authorisation where it is not or should not be satisfied that the best interests assessment is a thorough piece of work that adequately analyses the four necessary conditions.

I also rely on the obvious fact that the intention of paragraph 50 cannot be to require a supervisory body to give an authorisation simply because the best interests assessment makes a positive recommendation, whatever the quality of the work disclosed in the assessment. On behalf of Hillingdon, it was accepted for the sake of argument that it would not be bound by an assessment that was in effect so poor as to be “a joke”, so it follows that paragraph 50 cannot be read as if it simply required a positive answer without cogent reasoning. Hillingdon has however suggested that a supervisory body is bound to act upon any best interests assessment that is not grossly and obviously defective.

Against this, the EHRC and the Official Solicitor argue that where a supervisory body knows or ought to know that a best interests assessment is inadequate, it is not obliged to follow the recommendation. On the contrary it is obliged to take all necessary steps to remedy the inadequacy, and if necessary bring the deprivation of liberty to an end, including by conducting a review under Part 8 or by applying to the court. This is in my view a correct statement of the law. The suggestion that the supervisory body is bound to act on any assessment that is not grossly and obviously defective sets the standard too low. It supposes an essentially passive supervisory body. This would not meet the objectives of the Act and would not provide effective protection against breaches of Article 5.

The nature of this process for supervisory bodies is not likely to be very burdensome, given the relatively small number of cases, and if it were it would be fully warranted to ensure that the right outcomes are reached for people who are likely to be the most vulnerable service users. It should never be a rubberstamping process. A standard authorisation has the same effect as a court order and there is no reason why it should receive lesser scrutiny.

For me, this is one of the key points (and the reason I’ve quoted so much of the judgement text). It is likely to strike at the heart of the supervisory bodies and the way they authorise deprivation of liberty safeguards. And good, I say, they are senior managers and earn enough money to be able to take responsibility for the tough decisions that are in place ‘on the ground’.

The other issues that are raised regarding the lack of appeal process and the failure to appoint an IMCA and refer to the Court of Protection more speedily are also crucial in the judgement but for me as a Best Interests Assessor there are number of very useful reminders about the need to display independence in my role as an assessor and to advocate for myself in demanding the time in a working day to produce a good quality piece of work worthy of the difficult decisions that are to be made.

Mostly though, I just wish we had more open systems so that we can better understand the views and improve of knowledge regarding the expectations of what is an over-complicated and flawed system.

As a Best Interests Assessor (and an AMHP) I do not feel beholden to do what is best for my employer. In fact, sometimes I take an almost subversive amount of pride in taking a more independent view and opposing some management decisions by applying the law. However, I understand that I have a certain amount of confidence and bloody-mindedness in my approach.

Perhaps if any changes in the system are made (although I don’t think they will be) a further consideration of independence of the Best Interests Assessor will be considered. I have done Best Interests Assessments for my own borough and for other boroughs when I’ve been ‘loaned’ out and I genuinely feel it is less pressured and easier to be ‘independent’ when you are assessing from a ‘wider view’ of not being employed by that borough. Of course, I hope that I always remain independent but I think it would add a further element of scrutiny.

I have no doubt I’ll come back to this case and this judgement. There’s a lot to get through and many issues that I didn’t pick up on. It emphasises the importance of some of the decisions we make and the importance of being personally responsible for the reports I write as a professional.

And for anyone not following Stuart Sorensen’s series of posts about the European Convention on Human Rights on his blog – I’d highly recommend visiting, reading and learning. I have learnt much from them.

Eligibility, Birmingham and Cuts

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While awaiting the details of the court judgement, there was an important ruling yesterday that Birmingham Council’s attempt to limit eligibility to social care services to those who have ‘critical’ care needs is unlawful.

Drawing out some of the definitions to what this actually means and could mean requires a look at the details of those who brought the case to court.

There were four defendents which the BBC explains include

a 65-year-old woman with severe learning difficulties who receives 24-hour care in a home paid for by the council

25-year-old man with a rare genetic disorder and severe learning disabilities who receives overnight respite care, also funded by the council

30-year-old deaf, autistic man with severe learning disabilities who is prone to self-harm. His specialist day care would also have gone under the plans


a 36-year-old woman with severe learning difficulties whose day care centre will close and who is also set to lose respite care

It’s useful to go back to the definitions of what ‘critical’ and ‘substantial’ needs are to understand fully the implications of councils moving the eligibility criteria from one stage to the next.

Critical needs exist where –

• life is, or will be, threatened; and/or
• significant health problems have developed or will develop; and/or
• there is, or will be, little or no choice and control over vital aspects of the immediate environment; and/or
• serious abuse or neglect has occurred or will occur; and/or
• there is, or will be, an inability to carry out vital personal care or domestic routines; and/or
• vital involvement in work, education or learning cannot or will not be sustained; and/or
• vital social support systems and relationships cannot or will not be sustained; and/or
• vital family and other social roles and responsibilities cannot or will not be undertaken

Whereas Substantial needs (those that Birmingham are stating they are no longer able to meet) exist where –

• there is, or will be, only partial choice and control over the immediate environment; and/or
• abuse or neglect has occurred or will occur; and/or
• there is, or will be, an inability to carry out the majority of personal care or domestic routines;
• involvement in many aspects of work, education or learning cannot or will not be sustained;
• the majority of social support systems and relationships cannot or will not be sustained; and/or
• the majority of family and other social roles and responsibilities cannot or will not be undertaken

A couple of things to be noted here. A differentiation is made between ‘abuse’ and ‘serious abuse’ so that one will be covered and the other won’t. What kind of ‘legal’ test would there be to determine when abuse counts as ‘serious’ or not? Can we see children in similar cirumstances being subject to a differentiation of level of care available depending on whether abuse is ‘serious’ or ‘not serious’? And who is doing the judging? Well, I can answer that last question. It is the social worker involved as I am asked as a matter of course to ‘band’ people according to these criteria.

The obvious glaring point is the lack of thought of any kind of preventative work that sticking so closely to the criteria will create. Where is the hope of creating those very creative personal budgets when only the very bare minimum of essential needs are being met.

I can’t claim anything other than relief that Birmingham case was challenged in court. These criteria and these levels of need look at people as lists of what they cannot do. That goes against everything that we know and the ways in which we practice by looking at strengths and looking at people as individuals. However, the reason the criteria were brought in in the first place was to end some of the ‘postcode lottery’ of care provisions and to bring consistency to who was offered what nationally. Of course, the problem remained that interpretations of these criteria vary so the consistency which is objected by ticking boxes (the only way the officials seem to know to apply it) depends, as mentioned previously on the social worker who is doing the ‘judging’.

Back to this case though, it was brought under the Disability Discrimination Act and hopefully the judgement will be available soon. Hopefully too, local authorities around the country will be leafing through it and realising that the wholesale and slapdash cuts that they are imposing are not legal.

As for the government of millionaires, none of them will be reliant on social care support from the council. They can buy in any support that they might potentially need and cannot understand the distress of those who are totally reliant on the availability of services.  They cannot understand the implication of their gung-ho ideological cuts and the thought of Cameron, Clegg and Osborne claiming ‘We’re all in this together’ sticks painfully in the throat.

Although I fully expect Birmingham to challenge this ruling, I hope that the case is held and that some of the trigger happy cutting is stopped and the very real effect of the cuts agenda is shouted out more loudly and more clearly – not just for those of us who are personally losing services but to raise our voices with those who cannot always shout so loudly.

That is what social justice is about and that is what social working is about.

Meanwhile in the Office..

Usually when I’ve mentioned workloads here, it’s because they are increasing or we are going through one of the ‘peaks’ in the general ‘peak or trough’ pattern of work balances.

I’m going to do it again because we are definitely in a ‘peak’. The problem is, the peak  has been pretty much ongoing for a few months.

The freeze on recruitment is biting much harder now. I suppose it was sustainable when one person, two people left. When numbers five, six, seven left it became more obviously apparent to everyone left in the office.

Our office has an empty look to it and none of us are ‘smart working’ or ‘working from home’. Sure, we have visits in the community but even at the beginning and end of the day, there is office space in overabundance that makes the thought of hot-desking comical.

So we are each working on more cases and the cases we are working on have more urgency attached to them as the allocation to a care co-ordinator have come later than they might otherwise have come.

Paperwork is being left uncompleted. Oh, you may pat me on the back for prioritising visiting service users and carers at the expense of ‘filling in forms’ but each piece of paperwork I don’t complete in a timely fashion has a consequence for said service user or carer. It might be a delayed processing of an individual budget – it might be the delay to a respite admission or a carers assessment – it might be the delay of attendance at a Continuing Care Panel (lovely 55 page assessment form sitting on my desk that induces nervous twitches). I could bring the form home – but I don’t. At the moment, I honestly think it is the ability to leave things behind at work and walk out at 5pm (as much as is possible) which is preserving my sanity.

It does mean that things aren’t getting done though.

There have been a couple of recent consequences of this – not helped by a rush of Mental Health Act Assessments  and Best Interests Assessments which had very time-specific periods in which to be completed.  For reasons that may be obvious, I have to prioritise Mental Health Act Assessments above everything else when they come in and Best Interests Assessments usually are requested in my experience during the 7 day period that an urgent authorisation is ‘running’ so have to be completed within that seven day period (note – these seven days have no consideration for the distinction between ‘working’ days or not and they include the period that the paperwork needs to flit backwards and forwards between Managing Authority and Supervisory Body so realistically, it means the Best Interest Assessor will have 3/4 days to complete the assessment).

My desk is like the inside of a paper recycling depot with filing done in various piles of paper. One pile is ‘things to be filed’, One is ‘things to do’, One is ‘not sure where to put this piece of paper’. I have overflowed to the empty desk next to me.

Yesterday some things  happened that caused me to reflect on the current work pressures.

Our service manager approached me at roughly 9.01am and asked me for the Self-Assessment Questionnaire for a service user (who has fairly advanced dementia and a distant and uninvolved family and therefore would need substantial assistance in completing it) I had taken on a few weeks ago. I hadn’t done it. She was very pleasant about it when I started listing all the other things that I had been doing. As I am wont to say when asked why I haven’t completed something ‘it isn’t like I’ve been sitting at my desk twiddling my thumbs instead of completing the work’.

The service user involved had a care package that had been set up as an emergency and it was actually working really well but we needed to create an individual budget for her. Ironically, I’ve visited her a few times to monitor the care package and ensure both that she is keeping well and to enable us to build up a relationship so she begins to both recognise and trust me. I didn’t get round to the SAQ as the format of questions was so alien to her. She didn’t want to answer questions about what she could or couldn’t do – indeed, she didn’t accept that she needed any support whatsoever and would say she didn’t understand what these nice ladies coming into her flat were doing (they were preparing meals for her!).  What she wanted was to tell me stories about where she used to work (although they were framed in the present tense) and tell me about her friends (mostly moved away or died) and how they visited her regularly.

I hadn’t completed the SAQ and the Performance Indicator Monsters are chasing me down. But, service user is safe and receiving support.

For me, this makes a mockery of the process of individual budgets. Yes, she could have a wonderfully creative package of care in place. But where is the time to sit down and talk her through each stage when she is (understandably) completely disinterested in process. It can feel almost cruel to labour the point for the sake of the department completing forms and ticking boxes.

How is her service to be ‘personalised’ and where are the champions of personalisation? They are telling us about packages of care where young adults can choose driving lessons to get around.  Where are the champions of the personalisation agenda in helping us with means to engage people who are frightened by the process and overwhelmed by self-assessment questionnaires?

Oh, wait, all the training is about people who take an active interest in being involved in the process of care planning and self-assessment.

I try. Believe me, I try. I have no interest in the process failing. Indeed, I held out a massive hope that personal budgets would serve older adults who lack capacity much better than the direct payments system did. I have been sorely disappointed.

Anyway having explained away my lack of action to the manager, she nodded, expressed sympathy and headed on her path.

Later in the day, I was confronted by an emergency situation. It wasn’t the nature of the emergency that caused me difficulties. I have dealt with many similar types of circumstances through my years of practice but what was different was my reaction.

I spoke to my manager and as we concluded that I needed to make an emergency visit, I asked for a colleague who was ‘on duty’ to accompany me.

The situation perhaps didn’t warrant it and there was an expectation that it was the kind of issue that I should be able to manage with my proverbial eyes closed but internally, I felt some of the panic rising. I suspect that was the combination of stress about workload issues and thinking about my next arranged visit.

My manager agreed for someone to go with me – possibly because I don’t think I have asked of assistance with a visit  for about three years so she might have clocked on that something was up so  we went together.

On arriving, I saw that the situation is one I could easily have managed alone. I felt almost embarrassed that my colleague had come with me but then I thought, I knew I had been right to ask. I can recognise my own reactions and needs better than anyone else.

Situation resolved successfully, I apologised profusely to my colleague for ‘wasting her time’  but she, of course, denied this and said she was happy to help.

The rest of the day, I was analysing why I had asked in the first place. Why did I suddenly feel phased by an issue that I have dealt with successfully many times before? I’m not sure I can answer that but I think I’ll put it down as a positive recognition that sometimes, we just need a little more help in the day to day work and we need to be able to recognise these moments to better serve those who rely on our services.

Even after ten years, I still have ‘wobbles’ of confidence. They happen less now as is to be expected but for a moment, it was as if I had been transported back to my early days in practice when I wondered if I would ever be like my more experienced colleagues and able to manage anything that was at the end of the telephone line.

It reminded me I’m not there yet and perhaps I never will become instinctively complacent about the work.

That’s not a bad thing as long as I’m in a team that is encouraging and supportive.

And I am.

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.

The Next Steps

The new coalition government published some of the details about their plans for the next five (gulp) years yesterday. I had a brief glance at the issues as they relate to social care in particular.

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I feel distinctly underwhelmed, I have to say. I’m glad the Tories’ ‘insurance scheme’ has hit a road-block at least. It made no sense at all to me and didn’t really address a lot of the more widespread issues relating to social care funding. The Lib Dems  seems to have dragged them back to the idea of negotiations and discussions.

Negotiations and discussions and commissions. That’s a bit of a drag. Haven’t we been here before? A few times. I know realistically there wasn’t another way forward but it feels like there is constant ploughing over the same paths again and again with more consultation documents about the same things. I wonder if the government really are serious about saving money when they just repeat the same consultations endlessly. At least the document mentioned the Wanless Report (which, incidently, I have a lot of time for). I wonder what difference the consultation will bring from consultations raised over the last few years and it seems like just another chance to delay the decision making even more.

All the other policies presented, apart from the completely unsurprising trashing of the ‘Personal Care at Home Bill’ which to be honest, didn’t make a whole lot of sense to me anyway, are just progressions of the ways things were moving in social care anyway.

As the Secretary of State for Health confirms

Today’s coalition announcement sets out how the Government will push forward reform of social care. The Government will:

• establish an independent commission on the funding of long-term care, to report within a year;

Unsurprising – see above

• break down barriers between health and social care funding to incentivise preventative action;

More preventative action can’t really be argued against. Preventative work has been completely neglected in the face of cost-cutting in the short term and meeting performance indicators. I’ll be keeping a close eye on this one.

• extend the greater roll-out of personal budgets to both older and disabled people  and carers to give more control and purchasing power; and

This was always going to happen regardless of which government was in power.

• increase direct payments to carers and better community-based provision to improve access to respite care.

Nice words – actually there has been a massive increase in respite provisions over the past few years and increasing it can only be a good thing.

The government has also promised to increase and prioritise funding into dementia research which is very positive. I wonder how much funding will be spared the scythe of government cuts in general though.

Burstow has been appointed as the Care Services Minister. He has, I understand, a fairly positive background in speaking up on social care matters. It could have been a lot worse, I guess and we’ll see if he has the power to battle it out with the Chief Secretary to the Treasury in order to secure funds for the department and the sector.

So I remain a little ambivalent. It’s hard to argue against any of the provisions made but where the difference will be made is in the amount of money that can be argued away from the Treasury by the Department of Health in the coming months.

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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.


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.