16p To Fund A Respite Package

Dear Mr S

Re: Steven Neary: Respite Arrangement & Charges

I am having to write to you again as I arrived home from work today to find this month’s direct payments remittance advice. Although, it was great to see an amount was included for the overnight respite that you agreed to in April, I was absolutely horrified to discover that Hillingdon are now levying a “client charge payable” at Steven. What this means in practice is absurd. You agreed to fund a respite package of 42 nights at £65 per night. The charge for both May and June were £129.84. That leaves me trying to fund a respite package for 16p!

What I find as hard to understand is that at no time during the long drawn out negotiations about the package was the subject of a charge ever mentioned. I have numerous letters and emails from yourself and other officers and I have attended many meetings where the subject of a charge has never been raised.

I feel totally hoodwinked. How on earth are we to carry out Justice Jackson’s call to build a trusting relationship when yet again I have been misled? I cannot believe that not a single officer I have met over the past few months didn’t know about the intention to charge Steven, so once again I have had important information withheld from me.

I draw your attention to paragraphs 95-96 in the Fairer Charging Guidance:


“Information about charges

95. Clear information about charges and how they are assessed should be readily available for users and carers. Local Better Care, Higher Standards charters should include this information. Information should be made available at the time a person’s needs for care are assessed.

96. Once a person’s care needs have been assessed and a decision has been made about the care to be provided, an assessment of ability to pay charges should be carried out promptly, and written information about any charges assessed as payable, and how they have been calculated, should be communicated promptly. This should normally be done before sending a first bill. Charges should not be made for any period before an assessment of charges has been communicated to the user, although this may be unavoidable where the user has not co-operated with the assessment. A first bill for a charge for a lengthy past period can cause needless anxiety. Any increase in charges should also be notified and no increased charge made for a period before the notification”.

What you have done seems to breach this policy on several counts:

  1. I keep being informed that Steven is due to have a new needs assessment in preparation for a personal budget. So, this charge has been levied before a needs assessment has been completed.
  2. No financial assessment has been carried out.
  3. No written information has been communicated to me until today, and even then, only indirectly via the direct payments remittance advice.
  4. You have charged Steven for May and June, which is before the charges have been communicated to us.
  5. You have charged for a two month period prior to notification.

I am requesting the following:

  1. The charges already deducted for May and June be reimbursed as soon as possible (i.e. Not wait until next month’s DP are due).
  2. No further charges are made until, firstly a new needs assessment is carried out, followed by a full financial assessment.

If this is not done, or the council are unwilling to rectify this, I wish this letter to be taken as an appeal against the decision to charge Steven for his care package without assessment, consultation or notification.

Finally, I would like to point out that although you agreed to the respite package in April, I have not been able to arrange any respite since then. Firstly, because the funds for May weren’t paid until today and from now, I cannot obviously pay for respite at 16p a night.

I hope this matter receives your immediate attention.

Yours sincerely

Mark Neary

Cc: Ben Conroy, Sharon Lamerton (Conroy’s Solicitors)

Linda Saunders (Director of Adult Social Care)


The Ballad of Smiler Watkins

Don’t You Want me by the Human League

Phil Oakey – thank you Sir

My yellow T shirt – a good friend through thin and thin

A bakewell tart – yum yum

An incline bench press – push it motherfucker

Three cushions (but definately not four)

Riding a Vespa to the coast – I want to be Jimmy

Discovering I share the same surname as H from Steps – perhaps not

Cloud formations – perfect

The smell of deep heat and fried onions at the match

A snail sucking a window pane – resolute

Letting one go in the lift – take that Mr CEO

Barry Cryer – good on you Bazza

Ducks – you crack me up. Yes you do

Hold on tight to the bath plug – danger averted

1891 – Oh yes

An inquisitive mole

Briana Corrigan eating a tuna sandwich outside Hull town hall – the devils in the detail

People in a pickle – don’t be so sexist

Imagining I have 12 toes – things are looking up

Being Boring by The Pet Shop Boys – Chris Lowe, you’ve done Blackpool proud

16 stairs (but only on the way up)

Not to mention my iguana – play that funky music white boy

Reunions – but not too often

Handshakes at funeral wakes

Gloves in July. Why are you wearing gloves in July? Why not?

That’s all

The end. You can leave now.

The New Deadly Sins: Resistance & Compliance

On the 29th May this year, a community care conference is taking place, entitled “Working With Highly Resistant Parents”. the sub-title to the event is: “Practical strategies to tackle obstructive behaviour and disguised compliance”. For more details of the event, see here:http://epidm.edgesuite.net/RBI/socialcare/SCCON/2012/HTML/SCCON_HRP_20120504.html

My apologies if it’s difficult to think straight after reading that but your thought process is probably being drowned out by an orchestra of alarm bells.

Before we go into any observations, let me just point out a few items included in the programme for this day. At 11.45, a child protection consultant will deliver a lecture on: “Identifying indicators of disguised compliance”. As a tasty appetizer before the lunch, the presentation includes, “How some parents mislead workers through passive, covert manipulation”. After lunch, the delegates will enter the “virtual world” to see how game technology can help practitioners “manage situations where parents or carers are resistant, obstructive, deceptive or un-cooperative”. And the big finale examines “where un-cooperative or deceitful behaviour may be as a result of a parental mental health problem” and alarmingly, “Parental grooming of professionals”.

Where has this language and ideas come from? What robust thesis is it based on? Is there a justifiable reason for such an adversarial position? Why are the parents and carers cast as the dangerous enemy?

Court judgement after court judgement, after court judgement, repeatedly take the position that in the vast majority of cases, the parent/carer are the experts on the client’s needs. It is the parents/carers who are most likely to genuinely know what is in the client’s best interests. And out of old-fashioned concepts like love and duty, it is the parents/ carers who are most likely to genuinely fight for their children’s best interests. Sadly, even the most committed professional with the upmost integrity cannot always do this as there will be other agendas at play, like budget cuts (or this week’s latest Cameron word – “efficiencies”), political decisions or ignorance of the law etc. The often quoted judgement of Justice Munby in Re:S, sums it up for me perfectly:

“115] I am not saying that there is in law any presumption that mentally incapacitated adults are better off with their families: often they will be; sometimes they will not be. But respect for our human condition, regard for the realities of our society and the common sense to which Lord Oliver of Aylmerton referred in In re KD

…, surely indicate that the starting point should be the normal assumption that mentally incapacitated adults will be better off if they live with a family rather than in an institution – however benign and enlightened the institution may be, and however well integrated into the community – and that mentally incapacitated adults who have been looked after within their family will be better off if they continue to be looked after within the family rather than by the State.

[116] We have to be conscious of the limited ability of public authorities to improve on nature. We need to be careful not to embark upon ‘social engineering’. And we should not lightly interfere with family life. If the State – typically, as here, in the guise of a local authority – is to say that it is the more appropriate person to look after a mentally incapacitated adult than her own partner or family, it assumes, as it seems to me, the burden – not the legal burden but the practical and evidential burden – of establishing that this is indeed so. And common sense surely indicates that the longer a vulnerable adult’s partner, family or carer have looked after her without the State having perceived the need for its intervention, the more carefully must any proposals for intervention be scrutinised and the more cautious the court should be before accepting too readily the assertion that the State can do better than the partner, family or carer.

[117] At the end of the day, the simple point, surely, is this: the quality of public care must be at least as good as that from which the child or vulnerable adult has been rescued. Indeed that sets the requirement too low. If the State is to justify removing children from their parents or vulnerable adults from their relatives, partners, friends or carers it can only be on the basis that the State is going to provide a better quality of care than that which they have hitherto been receiving: see Re F; F v Lambeth London Borough Council [2002] 1 FLR 217, at para [43].”

However, despite a huge body of case-law supporting the above, rather than opening up a more collaborative way of working between parents and professionals, it seems to have driven the profession into a deeper bunker position, that quite frankly, can be frighteningly hostile. Umbrage is taken at the parents/carers view, and the idea of care goes for a burton as battle lines are drawn and weapons are employed. This is an arsenal of psychological weapons that can be terrifying for the parent/carer to face.

Of course the language and content at this conference exposes the massive divide between the professionals and the carers. The professional view seems to be that the position taken by parents/carers is because they have something untoward to hide; something dangerous and destructive to the client is being hidden. The carers position, nine times out of ten, is that they are scared shitless about the enormous amount of power the professional holds. The carer is aware of countless stories of families being torn apart, by at best, ignorance, or at worst, unfortunately because of a vindictive, punitive individual or system. And if there is a difference of view between the carer and the professional, woe betide the carer if they chose to assert their view or challenge the alternative opinion. That is the reality for many many carers when complicated needs assessments are taking place and care plans are being drawn up. The carer has to be pretty sharp-witted to sift through the many agendas that are informing the process.

Lets examine some of the language of this conference: “Highly resistant parents” and “obstructive behaviour”. In my counselling experience, people aren’t resistant and obstructive for no reason. We resist something that doesn’t feel right; something we feel isn’t going to do us any good and may actually, cause us some harm. We may have smelled a rat and don’t fancy entertaining that rat. We become obstructive when something we don’t want or feel is no good for us, is being forced upon us. We feel backed into a corner. But the inference of this language is that the parent’s behaviour is pathological; we are the rat that has been cornered. In my case, the council wanted to send my son to a hospital/care home 200 miles away, probably permanently. Was I highly resistant to this plan? YES. Was my behaviour obstructive? Probably, from the professional’s perspective, by going to court and going public, I was obstructing their plan. Did I have any other choice? Well, that leads us on to the next succulent course on the conferences’ menu: “Disguised Compliance”.

I’m not entirely sure what that phrase means but I’m guessing that it means to pretend to be compliant, whilst behind the scenes, being anything but compliant. This is the professionals equivalent of wanting their cake and eating it. Even when it goes against your better judgement, we cannot be resistant and obstructive; we cannot fake compliance. We have to be wholeheartedly compliant, with no reservations or misgivings. The professional always knows best, and my God, have we got to be grateful for that. I’ve written many times that I regularly attended meetings where there were 8 professionals present and me. It was very intimidating. Nearly all of the plans proposed at these meetings, I was uneasy with. But, I learned to choose my battles, so with some of the less life threatening plans, I probably fell into “disguised compliance”. And then went straight home and phoned the solicitor. Or Private Eye. All fueled by nothing other than desperation on my part to avert a catastrophe but galling for the professionals because I wasn’t playing ball, although it may have looked like I was in the team.

I love the quote from Judge Endersligh in the judgement A London Authority V JH. In this case, the LA were furious that the man wanted to care for his wife at home and not be placed in a care home. They got round the wife’s views by classifying her as lacking mental capacity. One of the professional’s weapons at the hearing was the assertion of the husband’s “repeated un-cooperation”. Fortunately the judge had their number and gave them very shirt shrift:

“On many occasions (in the local authority statements and submissions, and in court) it has been asserted by the local authority that Mr H is unable to compromise or to reach a reasonable compromise and, by implication, that trying further to enlist his support and co-operation would be a fruitless exercise.

Mr H is a devoted husband, and I think a proud man, who finds it difficult to accept anything but the best for his wife, and this forms part of the picture.

However, I also find that Mr H has compromised his position since these proceedings begun in various important ways. He has compromised on the number of carer hours he seeks; he has agreed to occupational therapy and carer’s assessments; he has agreed to proposals for GP, District Nurse, community matron visits; he has agreed to abide by a review of Mrs H’s Linkline needs; he has put forward a constructive proposal in relation to the deployment of carers.

It is not only Mr H who at times has been unwilling to compromise a strongly-held opinion about the care and treatment which Mrs H must receive in her best interests. Since the start of these proceedings the local authority has not compromised any of its demands.

When significant issues have been raised in court, time and again the local authority has told me that Mr H is not willing to compromise, rather than that neither of us will compromise. Of course, what they mean is that he is not willing to concede the relevant point and neither are they. Compromise, as opposed to concession or surrender, is an agreement that involves both parties giving up part of their preferred position in order to reach a working agreement.

In his statement of 5 May 2011, the social worker Mr C says that the respite issue “has proved to be a long standing stumbling block that Mr H has always consistently felt unable to compromise on.”

The way that sentence is phrased is illuminating. Mr C does not say “which the parties have felt unable to compromise” or “which the local authority has felt unable to compromise on.” Here, the local authority did not offer any increase of respite hours. They were not asking Mr H to compromise but to concede. In short, they were not willing to compromise their position.”

What happened to the idea of public service? In the not too distant past, the idea was that the professionals were meant to serve us; they were meant to cooperate with us – the customers. It’s a shame but in the social care world that idea has been flipped on its head to such an extent that the idea of service is now laughable. It is never about the service user or the carers anymore – their needs come secondary (if at all) to the needs of the service. Do you read the agenda for the conference and get any sense that the end result, the driving force is about service? My sense was it was all about self-serving; fueling a distrustful state that has completely lost sight of its basic function. Justice Peter Jackson made the following statement about the role of the state in Neary Vs Hillingdon:

“Nonetheless, two central principles are clear.

21. The first is that it is undoubtedly lawful for actions to be taken by families and local authorities, acting together on the basis of a careful assessment of the best interests of incapacitated persons. The vast majority of arrangements are made in this way and involve no breach of the rights of the persons concerned. Where there is a deprivation of liberty (referred to as a “DOL”) a specific statutory code exists to provide safeguards.

22. The second central principle concerns cases of disagreement. The ordinary powers of a local authority are limited to investigating, providing support services, and where appropriate referring the matter to the court. If a local authority seeks to regulate, control, compel, restrain, confine or coerce it must, except in an emergency, point to specific statutory authority for what it is doing or else obtain the appropriate sanction of the court: again see Re A and C (above) and the authorities referred to therein”.

The finale is the really scary part. I have this awful picture of the audience being whipped into a frenzy by this juncture and the icing on the cake is to diagnose the parent/carer as mentally ill, or that they are engaged in grooming. Lets up the ante at the final knockings with two of the, still, biggest taboos in our society. A mental health diagnosis in the hands of a non mental health clinician leads us into very murky waters indeed. All sorts of plans can be railroaded through if we can show that the carer isn’t mentally capable of caring, or of making an informed decision about the person they care for. Mental Health = Risk, so therefore the professional with their craving for risk management plans will be galvanised into action and the carer is put firmly in their mentally ill or incapable place.

Grooming is quite a disgusting insinuation. These days, that word is used solely in connection with paedophilia and involves the psychological and physical intrusion of an innocent, vulnerable party. Now, that concept is being used by casting the carer as the groomer and the professional as the innocent child. I don’t believe that idea stands up to any scrutiny whatsoever but the scare mongering language will chill the blood of anyone presented with that accusation. And the inference is obvious: if the parent can groom an adult professional, just think what they are doing to the person they are caring for. these are the heavy weapons of the war but to quote Basil Fawlty: “Who started the war?”.

I work on the basic operating principle that if what I am being presented with feels totally at odds with my experience of the situation, then probably, the opposite of what is being presented is true. To that end, I’d like to propose an alternative conference on 29th May, called “Working With Highly Resistant Professionals”. Is anyone compliant with this idea?