The NHS Is Not For Sale

Today, Rightful Lives released our latest film, “The Twelve”.

In preparation for the film, I looked into the current portfolio and performance of Cygnet Health Care. The full findings are as follows:
As of 2018, Cygnet Healthcare declared 133 units in its UK portfolio. This includes units that were previously owned by Danshell and Cambian prior to their acquisition.
This report covers 120 Cygnet units. 10 of the units in their portfolio are located in either Scotland or Wales and both countries have their own regulator with a completely different ratings system to the CQC. There were 3 other units that did not show up on the CQC site or through a Google search.
This report is looking at in patient services.
Of the 120 units, 54 were residential homes and will not form part of this review. The majority of these residential units were former Cambian properties. The total number of beds in these residential units is 564. This is an average of 10.4 beds per residential home. This is significantly higher than the recommended figure.
In Patient Services:
For the purpose of this analysis, the units are categorised by the main description given on its CQC inspection report. A few of the largest hospitals cover several categories of patient.
Long Stay Mental Health Units = 22 hospitals (572 beds)
Learning Disability & Autism Mental Health Units = 18 hospitals (429 beds)
Adult Acute Mental Health Units = 6 hospitals (303 beds)
Child & Adolescent Mental Health Units = 5 hospitals (302 beds)
Forensic & Secure Mental Health Units = 4 hospitals (169 beds)
Eating & Personality Disorder Units = 1 hospital (26 beds)
Mental Health Nursing Homes = 3 hospitals (95 beds)
Learning Disability & Autism Mental Health Nursing Homes = 8 hospitals (94 beds)

CQC Ratings:
Outstanding = 3
Good = 30 *
Requires Improvement = 24
Inadequate = 9
Not Inspected = 1
8 of the hospitals with a “Good” overall rating had at least 2 inspection categories that fell into a “Requires improvement” rating.
Long Stay Hospitals:

The Acer Clinic (14 beds) (Good)

Victoria House (54 beds) (Requires Improvement)

Brighouse Lodge (25 beds) (Good)

Kewstoke Hospital (72 beds) (Good)

Lewisham Hospital (17 beds) (Requires Improvement)

Kenton Lodge (15 beds) (Good)

Aspen House (20 beds) (Requires Improvement)

Aspen Clinic (16 beds) (Requires Improvement)

Alders (20 beds) (Good)

Appletree (26 beds) (Good)

Churchill (57 beds) (Good)

Grange (8 beds) (Good)

Cygnet Lodge (8 beds) (Good)

Cygnet Oaks (36 beds) (Requires Improvement)

Cygnet Brunel (32 beds) (Good)

The Fountains (32 beds) (Good)

Limes House (6 beds) (Good)

Raglan House (25 beds) (Good)

Sherwood House (30 beds) (Good)

St Augustines (32 beds) (Good)

Storthfields (22 beds) (Good)

Vincent Court (5 beds) (Requires Improvement)
Hospitals 7 to 22 were former Cambian services.
Adult Acute Mental Health Hospitals:
Coventry Hospital (56 beds) (Inadequate)

Harrogate Hospital (36 beds) (Requires Improvement)

Stevenage Hospital (88 beds) (Requires Improvement)

Wyke Hospital (52 beds) (Inadequate)

Maidstone Hospital (65 beds) (Requires Improvement)

Victoria House (6 beds) (Requires Improvement)
Learning Disability & Autism Hospitals:
Beckton Hospital (62 beds) (Good)

Harrow Hospital (61 beds) (Requires Improvement)

Taunton Hospital (49 beds) (Requires Improvement)

Colchester Hospital (57 beds) (Inadequate)

Bastoll House (6 beds) (Good)

Cedar Vale (14 beds) (Requires Improvement)

Chesterholme (26 beds) (Inadequate)

Newbus Grange (17 beds) (Inadequate)

Old Leigh House (7 beds) (Good)

Thors Park (14 beds) (Inadequate)

Wast Hills (26 beds) (Outstanding)

Whorton Hall (22 beds) (Inadequate)

Yew Tree (10 beds) (Requires Improvement)

Cygnet Cedars (24 beds) (Outstanding)

Cygnet Elms (10 beds) (Outstanding)

Cygnet Views (10 beds) (Good)

Larch Court (4 beds) (Requires Improvement)

Sherwood Lodge (17 beds) (Good)
Child & Adolescent Mental Health Hospitals:
Bury Hospital (167 beds) (Good)

Godden Green Hospital (39 beds) (Requires Improvement)

Woking Lodge (31 beds) (Inadequate)

Sheffield Hospital (55 beds) (Requires Improvement)

Nightingale Hospital (10 beds) (Good)
Forensic & Secure Hospitals:
Bierley Hospital (63 beds) (Requires Improvement)

Blackheath Hospital (32 beds) (Requires Improvement)

Derby Hospital (50 beds)  (Good)

Clifton Hospital (24 beds) (Requires Improvement)
Eating & Personality Disorders Hospitals:
Ealing Hospital (26 beds) (Inadequate)
Mental Health Nursing Homes:
Tabley (51 beds) (Good)

Tupwood Green (32 beds) (Good)

Oak Court (12 beds) (Good)
Learning Disability & Autism Mental Health Nursing Homes:

Coulby Lodge (8 beds) (Not yet inspected)

Hollyhurst (19 beds) (Requires Improvement)

Hope House (11 beds) (Good)

Oaklands (19 beds) (Requires Improvement)

Thornfield Grange (9 beds) (Requires Improvement)

Toller Road (8 beds) (Good)

Willow House (8 beds) (Good)

Gledholt (9 beds) (Requires Improvement)

 

Promises

On yesterday’s compilation tape, Steven chose to include Promises by Take That. Bear with me. It is relevant.

Matt Hancock has been all over the airwaves all  week, promising this, that and the other. On Tuesday, he combined two promises. He promised the introduction of mandatory autism training across the NHS. This is a topic that has received a lot of publicity through the relentless campaigning of Paula McGowan after her son Oliver died a shocking, needless death. Hancock combined this promise with another,  more generic promise about a few things that may benefit the thousands of people currently detained in in patient services. This included the setting up of a group led by Baroness Hollins to review (in 6 months) the discharge plans for all people currently in segregation. There were other promises but they were so general, that five days on I’ve forgotten what they are. And I think that suited Hancock’s purpose superbly well. Promises of plans without people don’t stick. Talk about the number of beds doesn’t resonate but if we talk about Ahmed, Anne and Archie inside those beds, they might just capture the public’s attention and the pressure to do something ratches up. A bed, or 2500 beds doesn’t carry the same potential for an empathic response.

Yesterday, Hancock crossed a line. He appeared on Sky News not to talk about beds, or training, or money. He talked about Beth. I’ve written about Beth before and through a number of media stories, she is certainly in the public consciousness. Hancock apologised to Beth and her family for her continued detention in segregation. He also announced that plans are in hand to have Beth moved before Christmas. Beth’s father, Jez immediately came onto social media to state that this was the first he and Beth had heard about these plans. It was a truly shocking moment. Had Hancock just lied? It’s election time so we’re all drowning in the seas of lies but this was different. It was about a real person. Jez heard the promise. What if Beth heard the announcement? And believed it? It wasn’t a promise to move 150 nameless people. That sort of announcement evaporates into the ether like a ministerial fart. This was about Beth and we know her. Once promised, it won’t be forgotten and it definitely can’t be backtracked on. That plunges us into deeper levels of cruelty.

It also exposes the terrible conundrum of being a public story. As I argue above, there is something much more powerful about being a real person, a human being in media stories, in campaigning stories. But it also carries a terrible risk. Public property is precisely that. You are at the mercy of however everyone in the world wants to see and present your life. Your life, your future can be used by a minister for five minutes of electioneering. And whilst you’re mentally packing your suitcase and dreaming of your future life outside of segregation, the minister has moved on to his next photo opportunity with a group of cardiac patients in Bradford.

It happened to me and Steven back in 2013, albeit in much less serious surroundings. We had been made homeless and after I blogged about it, I was invited onto the Gaby Roslin show to talk about it. About 5 minutes into the interview, the director of housing and social care came on the line and publicly promised that the matter would be sorted within 14 days. She was lying of course. It took another 9 months of unbearable stress before Steven got a new home. But both me and Steven heard that promise. I ordered some new pots and pans and Steven started planning for his Saturday compilation tapes in his “new forever home”.

When Steven was 5 and he first heard Promises by Take That, he couldn’t say the word, promises. He used to say “prarmshashitties”.

It’s quite apt. Mr Hancock – don’t be a prarmshashitty. Please.

Campaign Trials

Twice recently I’ve been asked to come up with a profile of myself for events I’ve been invited to. Whilst I was umming and arring over what to write, it was suggested that the word “campaigner” be mentioned. On both occasions I winced. I wasn’t sure why that adjective should make me uncomfortable.

A few years ago I was asked to run a small, monthly supervision group for 4 workers of a charity that would have considered itself a campaigning charity. It had nothing to do with learning disabilities. I thought it was remarkable that a charity would think it important for its hands on staff to have a therapeutic space to reflect on their practice. I suspect it was a very rare occurrence. We met once a month for about 18 months and the majority of our time was spent exploring the shadow side of campaigning work. Full credit to the 4 workers for opening themselves up. We reflected on the dangers of ego, the less pure motives of campaigning, the competitiveness that can arise amongst campaigners. It was all grist to the mill and I like to think the workers were better campaigners for putting their psychological arses on the line. I tried to do the same during Get Steven Home, 7 Days of Action and Rightful Lives. My clinical counselling supervisor was incredibly tolerant of the many times during supervision, I tried to work on how my shadow was at play during those aforementioned campaigns.

My memories of the supervision group came back to me yesterday as I watched the social media reaction to Ian Birrell’s latest article about Matt Hancock’s response to the increasing pressure to get off his backside and do something about the ATU scandal. My initial reaction to Ian’s piece was cautious hopefulness. Of course it could all be an electioneering con. That was a view several people took. But it might not be. Years and years of campaigning might finally be paying off. There were certainly some statements from Hancock that I’ve never heard from a minister before. The best we can claim is that something positive might come from this latest twist in the story. Ian’s story also prompted those two themes from the supervision group: ego and competitiveness. Some people over claiming the part they may have played in the ATU campaign. Who has contributed more? Who has been on the campaigning scene the longest?

Has anyone ever come across Charles Bingler? I suspect not many. I’ve been reading a lot about institutions for my next book and stumbled across Charles a few weeks ago. Charles Bingler was born in 1861 and his early medical notes show that he was diagnosed as “an idiot”, the brutal term of that time to denote a learning disability. Charles lived at home with his parents and elder brother until he was 11 and then in 1872 his parents allowed themselves to be persuaded that the best place for Charles was an institution and he was duly packed off to a place in the Midlands that was home for over 500 idiots. His mother killed herself and his father died a couple of years later, leaving his brother Ernest as Charles’ only relative and advocate. Ernest was allowed to visit Charles once a month and they would go to a nearby farm for the couple of hours they had “accessing the community”. Over time, Ernest started to question why Charles needed to be in the institution. Charles came alive at the farm and Ernest was convinced that Charles could live outside of the institution, possibly even working on the farm. Ernest started his campaign to get Charles out. He lobbied the Farm owners and local dignitaries. He had a couple of letters published in his local paper. In 1878, he travelled to parliament in the hope of…. who knows? In 1880, Ernest unexpectedly died at the age of 24 and the story ends. Although it didn’t end because Charles continued living. The story goes cold because there was nobody left to campaign for Charles, so I guess it’s reasonable to assume that Charles remained in the institution until he died.

I think campaigners need to show a little humility. We need to recognise that we are a very small cog in a long standing wheel. If Matt Hancock finally pulls his finger out and we reach a time where people with learning disabilities aren’t consigned to a life in an institution, then Charles and Ernest Bingler would have played a part in that success as much as anyone being interviewed by Radio 4 in 2019. If you’ve ever retweeted a story about St Andrew’s, or sent your artwork to the Rightful Lives exhibition, or you’ve stood in the pissing rain outside the Department of Health, you’ve contributed something valuable. And there is no hierarchy of value.

And Charles Bingler’s life might have meant something.

Deputy Dogging

I received an email earlier in relation to Steven’s deputyship. These are the first four paragraphs:

“You’re getting a refund of some of the deputyship fees paid on behalf of Steven Neary.

The Ministry of Justice (MOJ) carried out a review and found that it set some deputyship fees too high between 1 April 2008 and 31 March 2015.

The fees charged did not match how much it cost the Office of the Public Guardian to supervise deputyships during this time. This is because it was difficult to predict costs as the number of deputyships rose faster than we expected.

We have improved the support and supervision of deputies and we continue to review our fees. We’ve now taken steps to refund all clients who paid too much.”

So. I’m delighted to get a refund. It will pay for Christmas. But it sticks in the throat slightly that this overcharging went on for 7 years. And it only came to light after an independent review into their charging practices. Their excuse about finding it “difficult to predict costs” is incredibly weak too. I’m not going to disclose the actual amount but their predictions were way off. To get an idea of how way off, imagine being charged £68.95p for a banana longboat in your local Wimpey Bar.

During those 7 years, I’ve been on the receiving end of the OPG’s inbuilt operating position that families tend to rip off their incapacitated relatives. Do you remember the dispute over the frozen peas and toilet rolls? Back when I was living with Steven 24/7 and used to do a combined weekly shop, it was queried how I seperate my purchases from his and how I should split the purchase of goods that we both use (i.e. frozen peas). Then there was the time I felt under dreadful pressure because I couldn’t find the receipt for The Proclaimers greatest hits CD and the OPG wanted me to account for the grand sum of £8.99.

I also recall being invited to speak at the Court of Protection annual conference. I followed the head of the financial deputyship department who spent her full hour sneeringly telling story after story of families financially abusing their relatives. No apologies for name dropping but Justice Mumby and I had a nice conversation over the Hob Nobs expressing our disquiet over the tone of her presentation. I hope that today, that manager feels gently hoisted by her own petard.

The scars of those experiences can still be raw to the touch. I’ve just ordered some new floor covering for Steven’s kitchen. Unlike the old frozen peas days, it is his home, his kitchen floor. I walk on it a lot less than he does. However, nervous of a beady eyed OPG official scrutinising Steven’s accounts next March, I’ve paid for 1/3rd of the lino. And one of the support workers has offered to lay it so Steven doesn’t have to pay fitting charges. Our actions are partly out of love and partly out of fear.

Families of disabled people. A different species. Can’t trust ’em as far as you can throw ’em.

My Trauma vs Your Trauma

I went for a camera up the willy jobby on Monday. I was climbing the walls with anxiety beforehand. I wasn’t particularly nervous about the outcome. I was frightened it would be as painful as the catheter fitting this time last year. That horrid insertion is locked away somewhere and seldom comes out these days. However the prospect of recreating that assault had me shaking. I guess that’s what trauma is all about. As it happened, it turned out fine. The doctor who carried out the procedure remembered me from last year as he was the one who cleared up the mess created by the assassin. It was all done and dusted in 5 minutes and I honestly didn’t feel any pain at all.

I spoke to several people about my anxiety before the procedure and they all responded along the lines of: “What do you expect? Of course the previous trauma will be reactivated. You’ve got to just withstand it for the duration”. I see loads of people with PTSD in my work and that’s exactly the same thing I find myself saying to them. We never get over a traumatic experience entirely. We find a place to store it so we can get on with our lives and we try to construct minimisation strategies for those times when the trauma is likely to be triggered. This theory may put me at odds with Feel The Fear & Do It Anyway but I believe my theory is as good as it’s going to get.

When it comes to the PTSD of people with learning disabilities and/or autism all those normalizing theories go out of the window. Who gives a fuck about their trauma? Far from empathy, the professionals won’t even acknowledge the learning disabled person’s trauma. Why should they if they dont see the person as human?

Julie Newcombe tweeted about her son J stopping dead in his tracks in the pasta aisle in Sainsburys, terrified that he was “in trouble”. A similar thing happened to Steven last weekend. He was putting the washing up away and accidentally dropped his Frosties bowl. It broke. He was in tears for over half an hour and wanted repeated reassurance that he wasn’t “going to M House for a long break”. I don’t know whether something similar had happened at M House but if it had it would have been logged as challenging behaviour and he would have paid a punishment price for his accident. I remembered the time he recreated a scene from Mr Bean passing a jar of coffee through the serving hatch and the unit’s total refusal to accept that it was anything other than “aggressive challenging behaviour”. One to the add to the very long list of justifications not to allow him to come home. It makes complete sense that an accident with a cereal bowl would reactivate everything Steven has locked away since 2010.

The staff at the hospital have been very kind since the catheter incident but they dont want to give my anxiety much traction. They are nervous about acknowledging it because that would mean acknowledging that one of their team caused the trauma. For Steven, there’s a double whammy. The professionals are reluctant to acknowledge his trauma because it would infer accountability on their part. But worse than that, they have to dismiss the very idea that he may have any kind of trauma because he isn’t human enough to experience something in the same way that the rest of the non disabled world might. So when the painful memories emerge from their box, they are ignored or diminished as something else. Something less than.

That’s the cruelty because it means that you’re completely on your own with your pain.

Rightful Lives: 1 Year On

This week marks the first anniversary of the doors opening of the Rightful Lives online exhibition.

It is important to remember why we held the exhibition. It was an attempt to examine and promote the relationship between the Human Rights Act and people with learning disabilities and/or autism. Rightful Lives never claimed to be a campaign. Rightful Lives was always comfortable with the scope of the exhibition and consciously decided to limit its scope to the people and the legislation mentioned above.

That said, my goodness, how people stepped up. The exhibition is a glorious coming together of people and a celebration of the creativity of the human spirit. The spirit of finding a voice when society is prepared to shit all over you. The exhibition rooms house sad stories, uplifting stories, horrific stories, hilarious stories – all as important as each other. A collaboration of pain, hope, stoicism and love.

Heavy-Load-Long

Lots of things have happened since September 2018 but sadly we have to acknowledge that if we were opening the exhibition this week, the art on display would be identical to that of a year ago. The man who was entering his 17th year in an ATU is now entering his 18th year. At the same time, Jack Moore, whose home museum we featured last year gathering dust whilst he spent another year in an ATU is now back in his own and able to curate his fabulous museum without fear of being pinned to the floor. Scandalously in the past year many more Jack Moores have been admitted to environments that spit in the face of people’s human rights. And it’s because of that chilling fact that we have failed in our mission. We haven’t been able to elevate people’s basic human rights far enough up the agenda for any significant change to happen.

We expected a lot and put our faith in organisations we felt might produce the change. We hoped the EHRC will follow through on their offer to bring legal action against those perpetuating human rights breaches. They haven’t. We’ve attended several meetings with the CQC and hoped they would act decisively on the information and ideas weve given them. They haven’t. We expected Matt Hancock to fulfill his statutory duties as the minister for health and social care. He hasn’t. He’s been more interested in his own facile self ambition. We wanted the LA and NHS commissioners to abide by the law and be accountable and responsible to the people they are paid to serve. They haven’t. We dreamed that the major disability charities could set aside their self promotion and join hands for the common good. They haven’t. We wondered whether all the major providers would locate their moral and legal compass and do what they promote on their websites. They haven’t.

The families will still love and fight. The advocates will still advocate. The journalists will continue to write. The legal people will still push the law. The professionals with values will still stand up and speak out. Mikey Brown will still photograph his world and Steven Neary will still find a Beautiful South song to soundtrack his world.

We won’t give up. We can’t give up.

https://rightfullives.net/index.html

A Gush

It’s been a brilliant week. Time for a bit of Saturday gushing.

On Monday we had a Cowley team meeting. We haven’t had a Cowley team meeting for ages. There has been a growing tension amongst the support team for a while that has been unusual and unsettling. I was nervous about the meeting and was determined that we didn’t drown in the small pools of negativity and remember that Steven is the most content he has ever been and that his unique relationships with each member of the support team played a big part in that. The two hour meeting was incredible. Despite the tension, everyone spoke with an honesty that was breathtaking. And halfway through the meeting, the mood changed and all the tension evaporated. Completely spontaneously people started giving positive feedback to each other. They owned the part they had played in the problems and gave heartfelt praise for the good stuff. Steven was delighted to have his whole team together. He sat on the sofa but after 5 minutes got bored and went off to do his own thing. Every few minutes he popped back with a huge grin on his face. At the end of the meeting, one of the team made omelettes for all. All week long, whenever I’ve thought about the meeting I’ve had a soppy smile on my face and a lump in my throat.

I’ve been following several social media discussions this week about a call for the use of body cameras to protect people with learning disabilities in various settings. I’ve been finding it very difficult to square my experiences with those people who are pro cameras. I cannot imagine asking the five guys in our support team to start wearing surveillance equipment. What on earth would Steven make of that? What would it say about his dignity and rights to a private life if he was filmed in his bedroom? Getting dressed, having a wank, sleeping? The meeting and our overall relationship was a success because we’ve all taken the huge, scary leap to trust each other. That trust is both very fragile but the rock hard cement that holds everything together. I’d hate to jeopardise that by allowing my fears or distrust to set the agenda. Rather than protect Steven, it feels like it would make him more vulnerable.

A random, unconnected series of gushes – I’ve received my appointment letter from the hernia specialist. I have become very self conscious about my unsightly bulge and although it means another operation, I’m looking forward to having my internal girdle fitted. The genealogist is cracking on with the task I set her and yesterday I had lunch with my cousin and collected some more brilliant photos of people from times gone by. And after watching the action from the Supreme Court, I’m now more hopelessly in love with Lady Hale than ever. It may sound fanciful but the feel from the Supreme Court judges wasn’t a million miles from the feel at Monday’s team meeting.

Finally, my copy of Social Work, Cats & Rocket Science arrived and I read it in two sittings. Marvellous stories, beautifully written. Oodles of wisdom, humanity, values, rights, humour and grace. I’m moved that I have such cool, sussed friends like Elaine, Mark and Rob. And it comes with the added bonus of a chapter written by a hernia inflicted bloke from Cowley.

20190919_182136

On Thursday, I had a chat with Steven about stuff. He’s been working his way through his Live Aid and Live 8 DVDs.

“Watched Elvis Costello on Saturday with Michael. Watched Queen on Sunday with Francis. Watched Paul McCartney and his friends on Monday with Des. Watched Mick Jagger and David Bowie on Tuesday with Alan. Steven Neary is a happy man”.

Together. Trust. Interest. Love. Allison Moyet.

End of gush.