Bitter Pops

This week the agency that supplies Steven’s support workers were inspected by the CQC. It sounds like it was a very thorough inspection. They spent a long time in the office – they spoke to me – they spoke to three of the support workers – and, they spoke to Steven’s social worker, or for some reason, the manager of the positive behaviour unit. It may be that the CQC still have him as their contact point from three years ago. I know that whilst Steven was held in the unit, I was deliberately blocked from giving feedback – when the CQC did their inspection of the agency a year later, they were surprised that I existed!

The reason why I’ve mentioned that we don’t know whether it was the social worker or the unit manager who gave feedback, is because the only negative feedback came from that quarter. And it struck me as being a bitter move. And like so much else connected with the LA, so biased as to be laughable. But it’s not laughable because the reputation of the agency hangs on things like this.

For the past four years, Steven has gone once a week to a day centre run by the positive behaviour team. In all honesty, I’d rather he didn’t go there. Our history is contaminated and there is always the risk that they will still interpret Steven’s behaviour through their 2010 lens and cause all sorts of problems. The support workers are bundles of anxiety whilst they are they – continuously being watched and their interactions with Steven logged by the centre’s own staff. It must be a horrible working atmosphere. I found out recently that the centre has been “rebranded” or “reimagined” – it isn’t a day centre any more – it’s an “outreach base”. God knows what that means but it might mean another of the new innovations (like meeting in Costa), where the expectation is you start at the building and then go off somewhere from there. That’s pure guesswork though.

Despite my reservations, Steven still goes there because he seems to like the place. He likes the three other service users and looks forward to seeing the manager there and having a sing song. He is there for four hours and the only thing he does there is to make his pepperoni pizza – there is nothing else to do, so the rest of the time, he sits and watches the telly.

The feedback the CQC received was that there were concerns about the lack of interaction with the support workers and they were not motivating Steven to engage with the activities on offer. This is where the framing becomes a bit dodgy. The feedback makes it sound like the place is a hive of activity but the reality is quite the opposite. It is hard for the support staff to motivate Steven to do something that doesn’t exist. But that piece of the jigsaw is left out of the official feedback. I’m going to ring the CQC on Monday and put them straight on that one – I don’t like them being misled – especially as the misleading is only done to score some bitter points.

The only other query that came out of the inspection was the “lack of record keeping”. I knew that would come up ever since I decided last year not to keep any of those intrusive logs in the house any more. It was quite an awkward moment with the CQC man because he obviously took it for granted that every home care package should come with a mountain of paperwork. But that’s not my problem – if the agency need to keep records purely for an inspection, they can do that and keep them in their office.

So, all in all, a good inspection, soured slightly by the continual need of the LA to get in a revenge poke whenever the opening arises. Such a shame.


Fire! F-F-F-Fire!

Steven had a great lesson at school when he was about 11 about fire safety. He was really engaged by the messages and would tell anyone keen to listen about how you should manage a fire in your home. And of course, he has also learned a lot about this subject from that other great expert of fire safety – Basil Fawlty.

A good friend of mine brought us a great housewarmming present. It is one of those monster steam irons that looks like it belongs in Aladdin. It pumps out incredible amounts of steam, so much so that my kitchen, on ironing day, resembles a Meat Loaf video.

On Tuesday, Steven’s support worker was in the kitchen doing a pile of ironing. Steven was in the living room watching Countdown and I was upstairs writing Christmas cards. All of a sudden I heard a loud but calm voice from downstairs – “EVERYBODY OUT NOW PLEASE”. I rushed downstairs to find Steven leading the support worker by the arm into the garden. The kitchen looked like a sauna. Steven saw me and ordered: “Outside please Dad – Fire. F-F-F-Fire”.

I explained to him that it was just steam from the iron and that we could go safely back indoors. He wasn’t sure, perhaps fearing he’d be sent to his doom like Manuel. The resolution was as follows:

Me: “It’s not fire Steve. It’s only steam”.
Steven: “Steam? Like East 17?”
Me: “Yep. Steam like East 17”

And so, in keeping with our life as one long musical, we now have a musical signature tune for any ironing session. Over to you Anthony Mortimer…….

Decent Proposal

Right – it’s done. As I wrote in the previous blog, I was going to make a formal proposal to the council that they meet the whole cost of Steven’s care package through direct payments, thus cutting out the middle man nad those 52% profits they are currently making. This morning, I submitted the proposal and now I sit back and wait for the shit to hit the fan.

In my introduction, I wrote the following:

“I wish to point out that my sole aim in making this proposal is to try and secure Steven’s care package in its present form. For some time, Steven is the calmest and less anxious that I can ever remember. I put that down to three things (Obviously that is down to Steven being able to manage his anxiety so much better for the purpose of this proposal I am focusing on the external sources): Firstly, he has quickly settled in his new home and is enjoying increased contact with his extended family that I know means a lot to him. Secondly, he has a team of support workers working with him who understand him and relate well to him and have become experts at spotting signs of anxiety and know how to work with this. Thirdly, Steven is doing things in his life that he enjoys and give him a quality and meaning and sense of fulfilment to his life. I do not want to jeopardise any of those things – hence this report.”

It has struck me that what I am proposing is the very essence of Personalisation and yet in doing so, it has led me into very murky waters. I’ve had dire warnings since the “Personalisation vs Profits” post. Warnings that the companies might sue me for loss of business, for stealing their staff. Also warnings that the council might not be too chuffed with my proposal because they will lose their commissioning fees and bonuses. More examples really that there are many people with their fingers in the care pie. And whilst all these people take their huge slices of the pie, Steven gets blamed for having a large pie.

It’s also struck me that isn’t just a Steven Neary story. I can’t just present it as a Steven Neary story because it will just look like that moaning Dad again. Surely this must affect every person receiving a care budget that consists of commissioned services from external companies. Please contact me if you have similar examples of companies providing your family member’s support and making massive profits out of them. I do believe this is a national scandal and I’d like the story to have more traction but I need some more input before taking this further.

I wonder if the people who designed Personalisation realised that so many people would be pissed off if it was carried out in its purest form. To really have choice – to really have control – that means people giving up control and losing big pots of money in the process.

Anyways, I’ll keep you posted. I’m sure I’m going to get a lot of resistance to my proposal but nobody can really argue with the basic premise – how to secure a vulnerable person’s care and support and give them real choice and independence, in the most cost efficient way. Let’s see if the powers that be can put their money where their personalisation mouth is. If they can, wouldn’t that be absolutely fantastic?

Personalisation Vs Profits – Who Wins?

I’m entering an interesting and unexpected phase in my relationship with the Council. I’m about to do them a massive favour and save them an absolute fortune.

I wrote on Tuesday that Steven had his FACS reassessment. There was an undertone throughout the meeting that things after the assessment won’t be as good as before. Cuts to his package seem an inevitability. Reference is often made to Steven being “expensive” and in court, I had to listen to one of the care managers say many times that Steven has a “gold standard care package”. Those phrases induce a feeling of guilt and embarrassment in me, which I suppose is the intention. The same thing happened on Tuesday – talk of “high needs” and “very expensive commissioned services” left me squirming. That’s the way it is in social care – the person with the needs becomes the problem, the expensive problem for having the needs they have.

We spent a lot of time in the meeting discussing an invoice from the firm commissioned to supply Steven’s transport. There was a hidden suggestion that I am ripping the council off. The social worker made notes of every journey Steven goes on and questioned the costs of each journey. I was in the dark – the council commission the cab firm – I had no idea what the charges are. The same threat was there with contract they have with the support agency. Some talk of the agency having to charge high fees because of Steven’s “high needs”. Once again – Steven is seen as the cause of the problem, in this case, the large cost of his care package.

Since Tuesday I have had my Poirot head on because I’ve been determined to sort this out. I had an instinct that the package would be substantially cheaper, if they paid the whole lot through direct payments. But I needed evidence to justify my stance. I had the idea of submitting a proposal to the council whereby they cover the package through direct payments but needed firm figures to support my argument. Through a mixture of dogged detective work and two flukey chance encounters, I’ve got all the figures I need and the result is truly shocking.

I want to point out that I’m not going to mention the overall, big figures here. Partly out of preserving Steven’s confidentiality but also out of respect for the support agency and the cab firm. I am not being critical of them. They are both businesses and their first priority is to make a profit for their shareholders or directors. I am being critical of a system that allows such abuse of the vulnerable to take place. Besides there is only one figure that really matters in terms of showing how screwed up the system is. Hang on to your hats…….

52% of Steven’s monthly care package budget currently goes directly as profits to the support agency and the cab firm. That’s 52 sodding %. We are talking four figures here. 52% of Steven’s gold standard package has got nothing to do with his care and meeting his needs and is all about the profit making of two businesses. I’ve checked that figure over 20 times because I still can’t quite believe it.

Steven doesn’t need that 52% – his needs are completely met by the other 48%. And by nudging over 50%, it demonstrates a stark truth about the social care world – the person at the heart of the care package is quite secondary to the many people who can make a tidy sum out of him. Is it just me or is this a huge scandal? Of course it’s not just happening to Steven. Is every single support package that includes directly commissioned services weighted in the favour of the provider rather than the person needing the service.

And let’s not even go into the constant bleating about the lack of money in the pot. There’d be a bloody sight more money if it wasn’t being trousered by so many people after a quick, easy and reliable profit. There’s a fundamental greed in all this too – the agency charge the council more for the weekend shifts but don’t pay a penny more to the workers who do a weekend shift. I struggle to see how you justify moves like that.

So, I’m going to submit a full costed proposal to the council, which will slash Steven’s current package by over a third. All the support, respite and transport to be paid by direct payments. Hillingdon have a set rate of £10.72 per hour. If they accept my proposal, I will save them £6 per hour for support and be able to afford to give each of the current team of support workers a significant pay rise from the present rate the agency pays them. Same with the cabs – the account fares are double (sometimes 150%) more than a cash fare from the likes of you and I. And the cab driver gets the full cash fare, rather than them seeing a reduced rate after the profits have been creamed off the account payments. A win for the support workers. A win for the cab drivers. A win for Steven as he will be able to maintain exactly the same level of support he currently gets. And a massive win for the council who get to save an enormous amount of money.

This is surely what Personalisation is all about. This surely what In Control is all about. Me, on Steven’s behalf, has had an active part in compiling the support package, costing it, chosing who provides it, and managing it once it’s in place. And it should please the efficiency savings brigade as it reduces the budget by over a third.

Any flies in the ointment? Well, Hillingdon currently have a purely arbitrary ceiling on their level of direct payments. I’ve scowered their website and can’t find anything in writing about it but I’ve been told several times in the past that they only allow direct payments to cover up to X hours of support each week. Steven’s hours exceed X. Will they relax this local rule if it means it will save them a fortune? Or will they put policies and power before common sense and financial savings. And before taking a strong ethical position about the funding of care.

I’m reasonably confident that my proposal will be accepted. We have form on this. Do you remember my 2 year battle to get a respite budget? For a year, the council avoided paying anything by insisting Steven’s respite had to take place in the same unit they detained him for a year in 2010 – it was their only respite facility. Then I persuaded them to pay for a support worker to do an overnight shift at home, so I could get a night out. They agreed to this but pulled the plug after six months. The support agency milked it and charged them £165 for an overnight but only paid the worker £55 – the council were unhappy paying those sort of rates. I proposed they pay me £65 (all of which could go to the support worker) from the direct payment budget and save themselves £100. They agreed in minutes. Money talks – Needs and Care doesn’t.

Once again people – a vulnerable person has their needs assessed to enable them to have a decent quality of life. Nothing outrageous – just good day to day support and activities. But in accepting that, you have to accept that the agencies involved in providing the support will receive a huge chunk of the budget for their pockets. 52% of Steven’s care budget goes directly into their pockets.

I’ll lay my cards on the table. This is financial abuse of the vulnerable.

Dirty Cash

Today was Steven’s FACS assessment. It went okay. His social worker is a good advocate for his needs and was a good guide through the horrendous FACS form. This isn’t a post about the FACS – I suspect that at the end of the day, Steven’s budget will be reduced but not by a huge amount. I’m sure the RAS will throw out a ridiculously inappropriate indicative budget and we’ll have to go before Panel for them to agree to make up the shortfall.

No, this post is about the way our vulnerable sons and daughters are huge cash cows for anyone interested in making a profit from their lives. Three things came up today that made me feel queasy with the exploitation of it all. Ironically, there was a section in the FACS about protection from financial abuse but it certainly wasn’t on the agenda to discuss that the various people providing the support package may be the ones doing the financial ripping off. Since we heard about the move of home and the need to reduce Steven’s damages, I’ve had many people offering suggestions on what to spend the money on – some of the suggestions were crazy. I always have to consider that someone from the Court is going to inspect the accounts and so, quite rightly, as Steven’s deputy, I am answerable to them. It would not be a good idea to waste the money.

Anyway, the first thing that came up was Steven’s transport. Because it was agreed back in 2010, that Steven finds travelling on buses very anxiety provoking and there is a risk if he should have a meltdown on a packed bus, it was included in his care plan that social care would cover his transport costs. They use the cab firm that we have used for years. The social worker showed me the invoice for August – it was deeply shocking. Even for the shortest local journey, the cab firm were claiming £20. I do the same journey to work and on my Wednesday late night, I sometimes get a cab home if it is pissing with rain. I get charged £8. That’s a £12 profit they are making – just because they can.

Secondly was the usual discussion about the fees the support agency charge. I loathe the course these discussions always take – because their fees are so high, Steven may have to have his support reduced to a more affordable level. Now hang about a minute. It is the LA’s choice to commission services from agencies – they are implicit in the profit making. I suggested again, that the LA give me the whole lot in direct payments and I’ll pay the workers myself. At present, Steven’s support comes from 2/3rd agency and 1/3rd direct payments. The LA won’t entertain that suggestion because they have a ceiling on the amount of direct payment hours they award and Steven’s total hours exceed that ceiling. Same thing. It is their own policy that determines this decision – change the policy. I’ve been trying to do a costing and I reckon I could save the LA about 1/3rd of their costs on support if they pay me the whole lot as direct payments. But they wont because it means them losing some control. They’d rather trust suppliers who are ripping them off than family carers who might act with a bit more integrity. It’s the respite argument all over again – I could cut a third off their expenditure; the support workers would be ecstatic because I could pay them more than the agency and Steven wouldn’t have to lose out on anything. The only loser would be the agency but they only have themselves to blame for setting their fees so high.

The third unsavoury aspect was with the LA themselves. Gingerly, the social worker mentioned that from now Steven will be charged for some of his package – for the service he receives. I asked her what service we were talking about and she replied that it was for “outreach”. Steven doesn’t use any council outreach services, although as regular readers will know, that means meeting in Costas. So, what is his outreach? Just having support workers take him out is now classified as outreach – the definition has been broadened. Steven pays for the place he is going to, pays for the support workers snacks whilst they are out and now he will be charged for the vague service called Outreach.

What does it all add up to? I’ve no idea of the actual figures but of the three “professional” organisations involved in providing Steven’s care we have (1) a cab firm making a 150% profit on every journey they take him on; (2) a support agency making a 100% profit on every hour they provide a support worker for, and (3) a Local Authority who have a Fairer Charging Policy that now encompasses a vague service called “outreach” that the service user can’t actually quantify what it’s for.

And there was I two weeks ago, wrestling with the question on whether a bedside lamp might be viewed as excessive waste of Steven’s damages.

It’s all a bit of a lark this safeguarding business. A big business at the expense of the most vulnerable. And the cruelest thing is that they get blamed for this expensive business. Ghastly.

The Mysterious Disappearance of Social Care Needs

Steven has his first FACS assessment on Tuesday. For those not in the know, that’s a “Fairer Access to Care Services” assessment.

Trumpets? Bugles? Oh, okay then – have a quick blow on your kazoo. I’ve read and heard a lot about FACS and as Eminem may have out it, I suspect we’re about to well and truly facked. I haven’t met one person who has come out of a FACS assessment better off than when they went in. I haven’t met one person who has managed to hold on to their existing care package after a FACS. Everyone I’ve met have suffered a loss as a result of their FACS.

And don’t forget once you’ve been Facked – you are then RAS’d. Your FACS is fed into the Resource Allocation System which will produce your indicative budget.

The more I write the Carespeak book, the more a common theme emerges. Whenever a word is used to describe the innovation, the reality is probably producing the opposite of the claim. Don’t claim this is “fairer”. The sleight of hand/tongue will almost certainly produce something very unfair. Read/hear the use of the word “fairer” as an alert that you’re about to be shafted. Be prepared. If the thing was actually fairer, there would be no need to claim that it is – it would just be fairer.

It’s a mean tactic because it is meant to put you on the back foot with its suggestion that what came before was unfair. At the Court of Protection round table meeting, one of the social managers said: “The process of the RAS produces an equitable service for all service users”. No it doesn’t. It produces a reduced service. A need is a need. No two people have equitable needs, therefore to try and assess everyone the same is a nonsense.

In preparation, I’ve been sent a copy of the FACS assessment document. It’s all scores, sliding scales of need and bonkers definitions. 75% of the assessment is about physical disability. None of Steven’s current care package is covered by any of the questions as far as I can see. There is no space at the end of the form to include “needs not covered by the assessment”. I’m nervous about what may pop out of the RAS, considering that none of Steven’s needs will be fed into it. His needs haven’t changed (not fundamentally) but if this form is the sole tool in the assessment, it would look like all his previous needs have evaporated. I suspect in monetary value, the care package will be slashed. I won’t be able to afford the same level of support that Steven gets now. He will either have to cut back on some of the places he goes to or I’ll have to reduce my working hours to fill in the gaps. We could do away with the agency all together and I can pay the support workers through direct payments (I’ve already been told that it is the current direct payment rate that has been used for the RAS calibration). They might be financially better off if it comes to that but it’s an awkward position to be in.

The last page of the form is devoted to the next consequence of the the FACS – the FCP – the fairer charging policy. Doubtless, they are based on the same principle – I can almost hear my friend saying: “The process of the Fairer charging policy produces and equitable charge for all service users”. I think Steven’s bill will be quite interesting. I’ve read the paperwork and you are meant to be charged for a service. Is commissioning an agency to provide support a service? At the moment, the only council run service that Steven uses is a day centre for four and a half hours every Friday – the rest of the week, he organises all his activities himself. There is nothing provided at the day centre. Although, we are long shot of the OT, Steven still makes his evening pizza whilst at the day centre – the rest of the time he sits and watches telly – there is nothing else to do there. Will he be charged for this “service”? If he does, he’ll stop using the “service” and make his pizza at home. There is a rather threatening section on the FACS form called “Possible safeguarding issues”, with one of the being the risk of financial abuse. There is a certain irony that the whole “fairer” stuff – access to care services and charging policy may be the biggest cause of financial abuse of their client base.

I’m running a sweepstake on how much Steven’s care package decreases after the FACS, RAS and FCP. There are no odds on him gaining something. There are no odds available on the package staying the same. How much do you want to wager?

The Mencap Pool Lady

It is a great pleasure today, to host a guest post from a great frined of mine and Steven’s – Jean Lambert. Jean runs our local Mencap Pool and she has been such a tower of strength over the years, particularly during the horrible time of 2010. Jean has recently written a short piece about her volunteering experience and it is an honour to host Jean’s writing. Over to the lady herself……..

My volunteering experiences – Jean Lambert

In the early 1970’s there was a television programme called ‘Magpie’, the ITV version of ‘Blue Peter’, and like Blue Peter, Magpie had an appeal each Christmas. One year their aim was to provide holidays for children who would not normally have been able to have one. These included children from deprived backgrounds and also disabled children (sometimes both). I was working for British Airways at the time, and along with some of my colleagues decided that we were in the right place to be able to offer holidays in the same way. We formed a committee and eventually an in-house charity to raise funds. We approached the programme producers and made plans. That first year we were able to take 50 children to Jersey. We provided everything for them (some turned up at the airport with only a carrier bag of belongings), including nursing care where needed.

Following that holiday we continued to do several more, in fact it is now a very big organisation within British Airways providing holidays and days out for many more children. It was during one of these holidays that another helper suggested that I would be suitable to help with a holiday she was about to go on with adults with learning difficulties. I had had very little contact with this particular type of group but soon found that helping them was very rewarding, challenging and taught me so much about life from a different angle.

I gradually became more involved with this group and helped at their social club. I spent time talking with them, playing records, doing jigsaws, painting, dressmaking and loads of other activities. When the club leader moved away I was asked to take over the responsibility of running the club, organising holidays and fund-raising events.

The holidays were mainly at an exceptional place called Churchtown Farm in Cornwall. The centre is designed specifically for people with disabilities (run by SCOPE) and encourages personal development for all, including the most severely disabled. Activities included rock climbing, canoeing, sailing, camping (in gale force winds) , hiking, rockpooling and even sunbathing. The evenings were not empty, there were things to do there too, painting, swimming, photography, pottery, the list is endless.

I learnt so much with the group at Churchtown Farm, each person showed different abilities, not just different from each other but also from what they would normally do at home. At home their parents would have just made them sit in front of the TV for fear of hurting themselves, not allowing them to try ‘normal’ activities for themselves. With very careful management they were encouraged to achieve incredible feats. I remember standing watching a Downs Syndrome lady try for 2 hours to climb a rockface about 6 metres high. She did it and was so proud of herself (I started smoking again in the time!). Watching achievements like this spurred me on to jelp the same club raise enough money to build a hydrotherapy swimming pool. We raised £65,000 and in 1977 Roy Castle opened the ‘Jubilee Pool’.

Running the club became all consuming. I spent a considerable amount of my time attending meetings with the professional social care team to improve the day care provision for my friends who were not able to speak up for themselves.

Unfortunately an incident involving a male helper and some of the ladies attending the club resulted in a police investigation into sexual abuse. This was an extremely sensitive issue and meant hours of liasing with the appropriate offices to ensure the safety of all concerned. I helped to draw up a Sexual Abuse Awareness procedure foe voluntary groups in Hillingdon Borough alongside professional care workers.

I was elected to the Community Health Council with special interest in people with learning difficulties and served four years on this council. This involved inspecting hospitals and care homes and advising on health care issues with respect to the people with learning difficulties within Hillingdon’s health care system.

The amount of work that this entailed made me re-evaluate how best I could still do voluntary work and I eventually decided to concentrate on helping at the hydrotherapy pool. I now spend several evenings each week helping a dedicated team of volunteers to maintain the pool and help small groups of people with learning difficulties in the pool. Only 2 of our ‘Friday’ group can swim, but they all have great fun playing games in the water: Trevor had to be shown every week how to swim, he forgot by the next week; Ling liked to sit on the bottom of the pool; it was a joy to see Katie walk unaided for the first time in her 11 years when her father put weights around her ankles to hold them straight; Andrew would never go to the far end of the pool until his 25th birthday, when he was told he was now old enough to do it; Caroline is a quadriplegic and can do nothing for herself, but with flotations aids she was able to flick one foot to propel her through the water, she really shouts loud when she gets near the pool. I could go on, stories about each swimmer but the important thing for me is to see the enjoyment they all get from the pool.

Some of the things I have needed to help these people with are feeding, washing, dressing, toiletting (including changing incontinence materials), and also supporting them verbally and physically to achieve their potential.