One of the ‘Just you and me, Mum’ birthday gigs a few years ago was to do a ‘hop on and off’ Big Bus Tour of London. LB and I caught the Oxford bus to Marble Arch, nipped into Oxford Street to buy some lunch (LB chose a pasty and coke while I had bean salad and water) then boarded the tour bus. Blue route tickets. The extra long route. We sat upstairs in the open air. It was a brilliant, sunny November day. “This is exciting isn’t it?” I said to LB cheerfully.

After the first few stops at London landmarks, it became apparent that he didn’t want to hop on and off. Or do the free river tour included with the tickets. He wasn’t budging. Even the Tower of London didn’t tempt him off his seat. The sun dropped down behind the City buildings and it became grey and icy cold. Sitting on the top of the bus.

“Gotta huddle LB, it’s freezing!!!” I kept saying to him, trying to lean into his skinny bod for a bit of warmth. He just ignored me. “Wish I’d got soup and coffee… crappy old salad and water,” I grumbled. Silence. LB was the picture of contentment, soaking up the sights and sounds of his favourite city. He didn’t want to talk to me. And he didn’t pay attention to the commentator, who kept telling us to look in certain directions to see particular landmarks. After a few times of trying to get him to look in the ‘right’ direction (for whose benefit?), I gave up. We sat in silence.

By the time we got back to Marble Arch just under four hours later, I was a block of ice. It took until we arrived at the Park and Ride in Oxford before I started to warm up. And the Oxford buses are always snug, warm spaces. What a day, I thought at the time. Chewing over the idiosyncrasies of having a child like LB.

I’d sit on top of that bus in a snow storm now. I’d sit in torrential rain. A thunderstorm. Anything. Just to hang out with him again.

There I was. Reflecting on grief, music and summer. When a mate bounced the CQC Review of Learning Disability Services into my inbox. The core gist cut and pasted below in italics.

About the inspections This review focused on services that provide care for people with learning disabilities and challenging behaviours. Our inspectors carried out 150 unannounced inspections that looked at two national standards. These standards related to:

• care and welfare.
• safeguarding (protecting people’s health and wellbeing, and enabling them to live free from harm).

The inspections took place at 71 NHS Trusts, 47 private services and 32 care homes. Our inspectors were supported by 51 professional advisors and 53 Experts by experience (people who receive care or carers).

Our findings

Five of the 150 inspections were pilots and were not included in the overall analysis. Therefore, of 145 inspections:

• 35 met both standards.
• 41 met both standards with minor concerns.
• 69 failed to meet one or both standards.

Many failings are a direct result of care that is not centred on the individual or tailored to their needs. Our findings show that some assessment and treatment services are admitting people for long spells of time, and discharge arrangements are taking too long to arrange. Commissioners now need to review the care plans for people receiving this type of care so that people can move on to community-based services.

• Almost 50 per cent of hospitals and care homes that were inspected did not meet national standards.
• Staff needed to be given appropriate training in restraint techniques.
• Safeguarding concerns were identified in 27 care services.

Follow up inspections

Our inspectors have returned to 34 services where we found most serious concerns. These services have provided us with action plans on how they will meet national standards. We have also followed up on all 27 concerns relating to people’s safety and have confirmed that these services have contacted their safeguarding team in their local authority.

Deep breath.

Please read (and re-read) the above carefully. And then take another deep breath.

How can such damning statistics, reporting on the lives of people, be so carelessly presented and, at the same time, dismissed?

35/145 services were doing what they should be doing. Eh? Less than 25%. People ‘accessing’ these services are those who typically need looking out for, care,  encouragement and, often (don’t shudder), protection. Society incorporates (or should incorporate) a diverse range of people with different abilities, capacities and capabilities but state organised services are failing to provide ‘good enough’ support in 75% services reviewed?

The CQC state that ‘Commissioners now need to review care plans for people’ so they can move on to effective services’. Wow. Can there be a greater exercise in blandness? Ineffectiveness?

Did you get that commissioners? You all busy at it? Reviewing these care plans?

As if.

What a load of billy bullshit. Learning disabled people are so off the radar when it comes to commissioners I don’t suppose many of them would have any idea this review exists. Total farce.

But from the CQC perspective, the ball has been chucked elsewhere. Into next door’s garden. Never to be retrieved. Doesn’t matter really. Because it doesn’t really matter. These are learning disabled people we’re talking about.

More damning statistics before the close of the statement; 50% of hospitals didn’t meet national standards, restraining training is lacking (sob) and 27 services had safeguarding issues.

Then the last bit that I’ve re-cut and pasted below. It’s such a masterpiece in billy bullshit and prevarication it deserves a second reading and highlighting:

Our inspectors have returned to 34 services where we found most serious concerns. [Eh? Not all 69? How was this whittled down? Geographical location of inspectors? Availability of inspectors? What was the criteria?]

These services have provided us with action plans on how they will meet national standards. [Er, what does this mean in practice? Is it going to be followed up? Are the action plans appropriate? How soon will these services be of an acceptable quality for the people receiving them?]

We have also followed up on all 27 concerns relating to people’s safety and have confirmed that these services have contacted their safeguarding team in their local authority. [Mmm. That’s a relief then. Are the safeguarding team any good? Is anyone going to check on what they do? Is there a timescale attached to this?]

People are ‘living’ in these settings. On the receiving end of the sub-standard practices identified (over and over again). Practices that no one with any power to effect change is going to do anything about. Harrowing. My heart is broken by what happened to LB in one of these hellholes. I can’t bear to think of those who are enduring similar treatment and misery, at the hands of a care-less system. Monitored by a gutless organisation with seemingly no power to effect any change.

I can’t understand how we can be in 2013 and this unacceptable practice continues. Nonsense reviews published, publicly, without outrage.

Surely someone is going to do something to stop it?

Warning. This is an information heavy post. Gotta be done as I’m telling this yarn over and over again. The world of inquests (heavily mugged from inquest.org.uk – a remarkable charity). Apologies if I’ve got anything wrong

As LB died suddenly, there will be an inquest. This is to establish ‘who’, ‘when’, ‘where’ and ‘how’.  Inquests are ‘fact finding missions’ rather than blame apportioning. There are two types of inquest; a ‘standard inquest’ (my interpretation) and an article 2 inquest. The coroner decides which type of inquest will be held. The a2 inquest is more in-depth and carries the power to be critical of the state. From the Inquest handbook;

In some circumstances article 2 of the European Convention on Human Rights, often referred to as the right to life, means that the state has a duty to carry out an effective investigation into a death. The inquest is normally the way which the state carries this out and inquests held in these circumstances are now referred to as article 2 inquests. They are required to be, in many ways, more thorough and far-reaching than inquests into deaths that do not engage this duty. 

Article 2 says that the state must not take someone’s life, except in very limited circumstances, and it imposes a duty on the state to protect life, so there must be a proper and thorough review of how someone died. Examples of article 2 inquests include where individuals died as a result of the use of lethal force by state agents (such as police officers) or while under the care or protection of the state (such as prisoners or other people known to authorities to be at real and immediate risk of harm).

The inquest is an open hearing and various witness will be called (or have statements read out). Sometimes there will be a jury. Families can choose to have legal representation or not. If the case is complicated, this is recommended. The inquest can take place months or sometimes years after the person has died, again depending on the complexity of the ‘case’.

Phew. There. The world of inquests in a few words. All new to us. Shocking that families have to wait so long for this process. Shocking that we have to pay for legal representation while the other interested parties can draw on their state funded legal teams. So hold on to your hats for some whacky ‘crowdsourcing’ fundraising gig. [Er, well, early days and all that, so don’t get too excited too soon].

For all the young dudes.

Lovely mate, M, came round yesterday. She told me how her son, her funny and engaging son, in his twenties, living in ‘independent supported living’, wasn’t happy. For various reasons largely related to choice. For example, he’d go to the supermarket, choose what to buy, then ring M in the evening to say he’d had no dinner. He hadn’t bought anything he could eat for dinner. She’d ring his support worker who would dig around in the cupboards and find pasta, cheese sauce and frozen vegetables. Again.

‘Choice’ trumping common sense or encouraging/enabling/facilitating a level of mindless engagement on the part of support staff. Either explanation crap. Either explanation completely unacceptable.

Patient choice and shared decision making is an important health policy area in the UK, with an emphasis on fully informed patients making treatment/healthcare decisions. There is recognition that the level of autonomy a patient may want, or be given, is influenced by various factors including the extent/severity of their ailment/illness, their age, social class, gender, ethnicity, sexuality and so. This nuanced consideration doesn’t transfer to learning disabled people, particularly in the social care world. If you’re learning disabled, choice is chucked at you. Prescribed from afar by policymakers both remote and removed from any understanding of what everyday life is like for this group.

Kind of hilariously, although of course it isn’t funny at all, there is no recognition that the experiences of learning disabled people are intersected by the above factors. Learning disabled people are, er, basically learning disabled people. Indistinguishable from each other in the eyes of policymakers, practitioners and probably the bulk of the British public.

So LB, once in hospital (and let’s not call this place a care home, eh?) was presented with choices on a daily basis. To see us, talk to us on the phone, go to the farm, go to Trax,  eat burgers, go to meetings, and so on. This emphasis didn’t involve any consideration of whether LB;

• wanted to make choices
• was able to make choices
• was helped in any way to understand the difference between the various choices and the implications of the choices made

There is no apparent concern over whether enough information has been presented in a particular form to enable informed decision making in the ‘choice space’ for dudes like LB. Hell no. Just good old fashioned choice: ‘Do you want to do x or y, or x or nothing?’ But not z which you ain’t allowed to do because we don’t have the resources, staff or inclination to let you.

LB did consistently make a choice. He chose to go home. But that option wasn’t available to him. Because, as I relentlessly keep banging on, choice isn’t really choice for dudes like LB. It’s choice Jim, but not as we know it.

A total fucking charade.

Bit of a tough 24 hours really. Starting with an unannounced, unexpected lengthy weep fest yesterday evening, sitting in the armchair upstairs. I’m not sure I was even crying really. Well not in any way I’ve ever experienced before. And boy, we are talking some serious crying in the last two months. This was a serious case of tumbling tears. So plentiful I had to move LB’s smelly t-shirt out of the way to avoid slushing the smells out of it. That action, in itself, increased the tear flow. My low level, constant concern about the dilution or disappearance of the smells. The lynx deodorant smells have almost gone (but can be topped up I suppose, although this seems a bit like faking it, so I’ll keep the two separate for now). But LB’s body eau-der is clinging on. Valiantly. Love him.  He had so many employment options open to him, if life wasn’t so fucking stacked against any recognition of these dudes’ talents, abilities and strengths. I’ve always thought this.

I wonder if the extreme crying was sparked by the first iteration of chest sorting. A slow recognition that there would be little new stuff to add. No new notebooks to enjoy and marvel at. No new ‘Pupil of the Week’ sheets. Yawning spaces ahead. For all of us. Life without LB. What does that mean? How can we possibly make any sense of it? Especially when we all miss him so fucking much.

Today was slightly better. In the sense that the tear downpour had dried to an intermittent drizzle. Not brilliant though. I did the weekly countdown type thing to his death this morning.  Again completely unhelpful and crushingly painful, as it has been for each of the past eight weeks. I continue to gasp for air regularly as the reality of what has happened stamps on my throat. Bastard grief.

Bastard unit. Bastard health ‘care’. Bastard social ‘care’.

I messed around kind of aimlessly later this afternoon trying to organise LB’s bus collection into something I could capture on camera. The third attempt in the past two months. This one as unsuccessful as the others. This is bugging me as his bus collection was so important to him.  I piled the models back into the box and thought about the crap pictures I’d taken.

I browsed back through the thousands of photos I have. Relentless snapper I am. It suddenly became important, in much the same way that I’m laying down markers for various ‘last things’, ‘when did that happen’, ‘in what order was x, y or z’ – (as I persistently bug Rich with), to find the very last photo I took of LB. What a terrible marker. Such complete sadness. All over again.

Here it is. After a buffet lunch at our favourite Indian restaurant, the Aziz, on the Cowley Road. June 16th. And it was more fun than this photo portrays.

I have to go now as the downpour is threatening again.

He shouldn’t have died.

I started organising LB’s chest today. In the bay window of his old bedroom. Overlooking the London Road. A space that has become so much more connected to the dude in the last couple of months.

His fifteen year old Early Learning Centre car mat lined the bottom of the chest perfectly. This mat, together with the orange binoculars and ELC police tabard (that must be in the loft) were symbolic of LB’s early childhood.

So, what other things made the cut? Here’s a selection, clockwise from the top lefthand corner;

Hat collection. A baseball cap for every occasion including the treasured Olympia Horse Show cap and Reading Bus cap. The dude was a hat kind of geezer.

Box of small bits. (More) bus tickets, bling, his ipod shuffle, passport, figures, business cards, plastic coins and paper money.

Playmobile coach, ambulance, street cleaner, emergency service personnel. And obligatory person in a stretcher. LB’s imagination was never far from ‘an emergency situation’.

Pupil of the Week sheets, a Valentine’s card made for a future girlfriend, pictures of models (though not the black and white picture of Rosie Huntington-Whiteley LB kept for months until he saw a colour picture of her and chucked it in the bin. Blue eyes were a definite no for him, in any potential girlfriend. Even a top model). School work (with weekly news.. again hilarious), timetables, leaflets, drawings and septic tank pages from the Reading Yellow Pages.

Books and DVDs. All the regular suspects that anyone who reads this blog could guess at by now.

Various notebooks. As previously documented on these pages.

Larger books and magazines. Including The Mighty Book of Boosh, Olympia Horse Show programme (2010), complete Great Britain Passenger Timetable (1975-76), bus and lorry magazines.

Hornby model buildings, Olympia rosette, Woody and Virgil toys, Linx deodorant, well worn or customised die cast models from the ‘Connor.Co scrap metal depot’, his electric shaver and 18th birthday celebration decoration from school. Not sure why the shaver is included really, as shaving was always a dread activity. It could be the bodily connection (kind of similar but different to the smelly t-shirts, which are staying at the side of the bed for now. Easy smell access at panicky night time moments).

Two things deserve a special mention.

LB’s ‘Wanted. A Friend’ poster from a few years ago, which is both hilarious and sad. Hilarious as the ‘successful applicant’ is Joe H (of the Afghanistan phone call fame).  Once Joe left school LB asked over and over; “Where’s Joe H, Mum?” and laughed his socks off when I’d (always) reply “Joe H?! He’s got trouble written all over him. With a big T.” Hours of chuckling. LB loved Joe’s anarchic character.  But I find it sad how straightforward LB’s friend criteria are; someone to cheer him on, listen to him and be there for him. Someone kind and fun. He was such a simple and gentle dude. It’s heartbreaking to think about his last months. How could this have happened????

And the little bag of shells from the mermaids. I got the kids to search for these, so we could put them in LB’s coffin. They couldn’t find them amongst the mess in his room (and under the bed which was rumoured to include a half eaten Chinese takeaway, as LB regularly told his teachers to their amusement). Maybe we’ll give the shells a sneaky burial under the snowdrops and bluebells we’re allowed to plant around his grave.

The strange, half relationship between LB, things and place is making no sense to me. But it’s all we’ve got right now. So we’re just doing what feels right.

The saddest of sad times.

I can’t write about the specifics of what happened to LB. The inquest, at some point, will make the details public. This may not be until next year. We have no idea when. And yes, that’s pretty hard to deal with. We have to wait for answers, accountability and (hopefully) potential change for other dudes like LB.

I can’t discuss the specifics of his experience, but I can reflect on some more generic issues. The unit underwent a ‘transformation’ in the few weeks before LB died.  A decision, somewhere, had been made to touch up the place.

So, the lounge/second seating area became out of bounds because of re-flooring/carpeting. Now I ain’t no NHS/Clinical Commissioning Group/unit manager/Care Quality Commission inspector, or otherwise, but I’d be interested in how this type of ‘upheaval’ is managed (both in advance and in real time) in terms of the organisation of patient activities/outings/availability of staff/transport in a unit of this type. How spaces are (re)organised to avoid disorientation/distress. And glue smells.

But what do I know?

A  few days after the re-flooring experience, LB’s room was suddenly stripped of any personal belongings and re-painted. A cream and cherry type combo.

I don’t know where LB went while this happened. Was he told about this in advance? Was this huge change (for him) communicated and managed effectively? Was there a plan to make sure this upheaval was managed for him and the other four patients? I don’t want to labour a point here, but an 18 year old dude (with learning disabilities), who had bewilderingly been plucked from a loving home setting to an alien space without adequate explanation [and everything else that went with that experience which I can’t bear to think about] would find the stripping of that space distressing and confusing.

But surely, I hear you say, with gusto, confidence (and hope), the (more than plentiful) unit staff discussed this potential upheaval with him and his family in advance? We visited pretty much daily and the decorators were arranged some time in advance. A conversation, warning, flag up that there was going to be some upheaval, working together with family to smooth this disruption? A full team of psychiatrists, psychologists, occupational therapists, learning disability nurses and support workers in the wings. On it, anticipating it, dealing with it and smoothing it. This kind of detail wouldn’t be overlooked. I mean, what was the point of a specialist treatment and assessment unit otherwise?

Tumbleweed.

Don’t assume anything in the dark and dirty world of learning disability/mental health and social care provision.

Will turned up this afternoon with a set of polaroid pics Owen took on a holiday in Pembrokeshire about 12 years ago.

Wow. In the moment, on the spot, happiness. More ‘instant’, more snapshot than conventional photos?  Breathtaking. Heartbreaking.

Gail, a ‘surprising Clare’ mate, posted a link to Simon and Garfinkel’s Bookends a bit later on Facebook. Her husband, Bob, died unexpectedly a few weeks before LB.

Says it all really. In few words.

… I have a photograph.

Preserve your memories, they’re all that’s left you...

I’d forgotten how much I love this song.