I’m going to start by letting you into a secret, I am rarely shocked these days. In some ways I hate how the last decade has made me but I’m deeply cynical and mostly unflappable. Steeped in bereaved families fights for answers and accountability, deeply aware of the many flaws of our justice system when it comes to disabled people, it’s not unusual for families to tell me I’ll be surprised or shocked when I first meet them. Truth is I rarely am these days, there’s such a pattern to the systemic biases and neglect of learning disabled and autistic people.

A couple weeks ago Sara mentioned someone who’d been in touch with her after reading her book. She asked if she could put the family member in touch with me. Last week I got to speak to Carol Shannon and I can honestly say I was dumb struck by some of what she told me, not at what happened, but at what didn’t happen. I was shocked.

Yesterday was the 9^th anniversary of Mark’s death, please let me tell you a little about him.

I speak to Carol on the phone, she’s at home in Liverpool, we’re speaking before she goes to work. She explains she’s worked in the same primary school, Ken Dodd’s old school, for the last 27 years. She started working to fill her time while Mark was out of the home, first as a dinner lady and now a cleaner, just for a few hours a week. Her husband, Tony, retired a few years back, but he was a welder.

“Through this dreadful situation with Mark, he’s now turned to art, he does art welding… he makes all sorts of things… plant pot holders, Liver birds, Liverpool FC badges… we take them to a shop at the Albert Dock called The Nest his work is on display there. It all came about from wanting to lose himself with grief side of it”.

I’ll come on to this dreadful situation shortly, and it really is.

Carol explains how reading Sara’s book made her realise that what happened to Mark was happening to others, and that they needed to keep fighting to get answers:

“it flagged up numerous things that happened to her, that’s what has happened to us… it leaves you so bitter and angry. We think they got away with murder, there’s no other way I can explain it”.

When Tony and Carol married they lived in a placed called Lodge Lane, where the Toxteth Riots erupted:

“We lived in a two up, two down terraced house, quite a poor area, Mark was born there in 1972. Toxteth people were amazing. When they found out Mark was severely disabled (Mark was born with Cerebral Palsy, was learning disabled and had epilepsy) there was another couple who also had a disabled child and they said “we’re off to America to place called the Institute of Achievement for Human Potential in Philadelphia. They look after children with needs like Mark has, and try to develop them into walking and doing more with their lives”. Local people raised funds for this family, and Mark and our family.

We took Mark out to this Institute when he was quite young, about 4. We underwent a strict routine with Mark, it was based on exercise, breathing exercises, arm movements, that sort of thing.

It was a hard strenuous job. My husband made a ladder in the living room. Our house wasn’t a house, it was like a gym. He used to teach Mark to walk across the ladder, doing all sorts of things to stimulate his brain”.

Carol recalls how the area dipped after the riots. The combination of that change, alongside their property being too small as Mark was getting bigger and their expecting their second child, a son, they decided to move up to the Broadgreen area. They’ve lived in that home ever since.

Carol recalls lots of happy memories in Mark’s childhood:

“He went to a fantastic special school called Princes Special School, in Selbourn Street, Liverpool and he absolutely loved it there”.

After Mark left school he was given a place at a day centre provided by Liverpool City Council, Fairfield.

“He left Princes at 18 and went to Fairfield Day Centre. Mark absolutely loved it there, loved it. Initially he had one to one support, they’d go out about and do stuff, they even went on holidays in Wales. The transformation in Mark was fantastic, because he was getting personalised attention”.

Mark always lived at home with Carol and Tony:

“He was our life, our life revolved around Mark, he was there all the time. He went to the day centre for a few hours each day but the rest of the time he was at home.

At the weekend we’d sit him in the car and go out to places, over the water to the Wirral, we’d go to parks and different places.  

We were just here, there, and everywhere with him, as long as there was a quiet atmosphere. Mark didn’t want for anything”.

Carol recalls they had a few days respite for Mark each month.

“He’d go to an NHS place, Wavertree Bungalow. Sometimes he’d enjoy it but on the whole he loved his home life. He never really wanted to be anywhere else other than in his home, he was happiest here.

Mark enjoyed quiet walks, we used to go out into parks and things. He didn’t like shopping or going to places where there was a lot of noise”.

After a while Liverpool City Council said that they could no longer afford to provide the Fairfield Day Centre as it was. Instead of the personalised support Mark was getting, and thriving from, they insisted on one support worker with three or four service users.

Following the changes at Fairfield day centre Mark’s parents decided he really needed more stimulation than he was getting. They contacted Mark’s social worker who recommended a “really good service, Thingwall Hall”.

Thingwall Hall, still open, is run by the Brothers of Charity. Their website describes it as follows:

“Thingwall Hall is home to an administration centre, a day service for adults with learning disabilities that includes a sensory room, a respite facility, registered nursing home and a swimming pool.

The Brothers of Charity Services in Merseyside provides support to some of the most marginalised people in society including adults with learning disabilities in the form of care in the community and day services across Liverpool, St Helens, Knowsley, Southport, Formby and the surrounding areas”.

Mark went for less than three years before he died. Carol was initially impressed:

“At the start, he was only there for about three months and we thought this service was absolutely brilliant. Mark was smiley coming home, the staff seemed to be positive. We were involved, there was a plan. Then from about three months on things started to get out of control. I was going in on daily basis complaining about one thing or another”.

Carol shares a litany of failings relating to medication, listening to Mark, managing his continence.

She remembers receiving a phone call to say “I meant to tell you on Monday last week we ran out of Mark’s medication” which meant he’d been without his epilepsy medication for a week, which explained the extra seizures he was having at home.

“Mark didn’t like spicy foods, he liked egg and chips and spaghetti hoops, plain food. I thought I had to do a plan about what he liked when he started. I made a book, put in it his likes and dislikes. I said Mark dislikes curry and he will squirm if he has it in his mouth… that sort of thing.

I get his book back and it said ‘Mark had curry today, he was trying to grab the fork and spit it out, but we persevered and he ate it all’.

He was squirming, and trying to grab the fork, and spitting it out, because he didn’t like it. How could they not realise that?”

She couldn’t understand why Mark was getting sore and suspected that he wasn’t being changed out of his incontinence pads, despite supplying enough for four changes in four hours and cream (far in excess of what was ever required at home). Carol made a mark on the side of Mark’s pad one day, sure enough he returned home later in the same pad, which meant he’d been left sat on the same pad all day. She eventually found out that the pads she was supplying were being used for other service users.

Mark wasn’t expected home until 15:30 but on regular occasions they’d be a knock at 14:30, the care worker would say they had to get an early bus, so they thought they’d drop him home early. No prior notice.

There was meant to be a bus that would pick Mark up but apparently it broke down and wasn’t repaired. Carol said they’d drop Mark in, then when they saw the bus was back working they requested Mark be collected.

“They told us we’d have to drop him in because Mark had a motability car… or alternatively they’d send a staff member to collect Mark and keep his car with them. Then it meant if anything happened I wouldn’t be able to get to Mark so we said no, we’d just keep bringing him in”.

Mark’s parents were asked to buy a power pack for his wheelchair because “staff were finding it incredibly difficult to push Mark because he’s a big boy”.

These were not adaptations required at home, but Carol and Tony didn’t want Mark to go without:

“Me and my husband said we’d buy a power pack. We paid hundreds of pounds to buy it and have the power pack fitted to Mark’s wheelchair. It was constantly damaged or broken in some way, staff would drop off the pavement not use a dropped curb, the handle would be hanging off, wires were disconnected”.

When Mark started at Thingwall Hall they heard that they also provided respite service.

“Given the first few months there was really good we thought we’d give that side of it a go. Mark only went on a few occasions. Once we had a call to say Mark’s had a fall, banged his elbow and wrist and something else had happened. We thought oh right well things like that do happen.

On another occasion we got a phone call that said Mark’s got a red mark on his face. How it’s happened we don’t know. Then one of the ladies said another service user saw Mark sat in his wheelchair and slapped Mark around the face.

I told my husband and he was so annoyed. He said that’s it, twice its happened, he jumped in the car and went round. Fifteen minutes later he’s back home with Mark and he said he’s never ever going there again. And he didn’t”.

Carol raised their concerns at Mark’s annual review with his social worker. They shared he was coming home distressed and shared their worries about the care he was receiving:

“It was on and on, a cycle of things. This wasn’t just one occasion, it was consistently happening. There are that many things I can tell you about that went wrong, I felt like the ogre going in complaining sometimes”.

Carol explained to the social worker that there were a number of people leaving, the staff weren’t staying and they didn’t always have the staff to cover the services. The social worker said she’d have a chat.

A CQC inspection, a review of compliance, from January in the year Mark died confirms many of Carol’s concerns:

We found that Thingwall Hall Nursing Home was not meeting one or more essential standards. Improvements are needed.

The majority of staff were respectful and treated people in non judgemental way.

People’s care and support needs were assessed and most care plans were detailed and up to date. However some had information missing or were not up to date and this reduced the effectiveness of planning and modifying care and support.

There were activities and experiences in place for most people but opportunities for accessing the community had recently been limited.

Information on people’s health needs was usually detailed and well managed. There were occasions when there was not sufficient information on people’s changing healthcare needs and this resulted in a lack of consistency in the care delivered. This meant that some people were not experiencing effective, safe and appropriate care, support and treatment that met their needs and protected their rights.

Carol and Tony felt like they were between a rock and a hard place. Carol would drop Mark off and be told he’d be going to the sensory room, or out for a walk, and she’d then find these things weren’t happening and he’d been left to sit in the canteen by himself for a few hours.

They came up with a solution. They wanted him to have quality of time while he was at Thingwall Hall, so instead of Mark being dropped off at 9:30am they offered to bring him in at 11am each day, so he could have an hour having lunch and then another hour doing something constructive, then Carol would head back up and collect Mark after she’d finished work as a dinner lady.

I’m talking to Carol early afternoon last Friday, 10 September, she tells me this:

“Mark’s hours had been reduced because he wasn’t getting the quality of care he needed, I didn’t think, but he also couldn’t be at home with me all day. Some days I’d get Mark up and give him a shower and think I don’t want him to go in there really, but he needs stimulation so I’d take him.

On the day in question, it’s actually nine years ago today that it happened. I drove Mark in myself.

He was quiet, on this particular day he had a good weekend [it was a Monday], we had been out to the park and everything, he was quite happy.

I can remember the day as though it was yesterday. We pulled up at Thingwall Hall, I took Mark out the back of the car and as I’m taking him in, he grabbed my hand, as if to say I didn’t want to go in there. He was shouting and screaming. I said Mark calm down you’ll be fine, you’re going in, you’ll have some lunch and I’ll be back to pick you up in no time.

When we walked in there was nobody around. Eventually I saw a support worker, I said I’d brought Mark and could you tell me who’s got Mark today. ‘Sorry, haven’t got a clue, go down to the office, I can’t stop’ was the response.

Jimmy worked in the office. I explained and he said ‘just leave him there, I’ll find out who’s got him and they can come collect him’. I thought OK, I waved Mark off, said bye and told him I’d pick him up later”.

Carole went to work and had just got home at about quarter past one and made herself a cup of tea. The phone rang at just turned half past two. It was the day centre manager. Carol asked if everything was ok and she responded:

“Don’t worry, it’s no problem, but there’s been a little bit of a hiccup at the swimming pool”

I said why what’s happened?

“I’m not really sure, if you can come round we’ve called for an ambulance for Mark”.

Carol dropped everything, grabbed her keys and went around to Thingwall Hall. She describes bedlam in the car park with staff running around red faced. She spotted a paramedic holding Mark’s hand, he had an oxygen mask on. His clothes were damp and he had his coat on.

“I said Hiya Mark, you alright mate, what’s happened? I was rubbing his hair, I was frantic and asked what had gone on. I was told:

“We brought him over after lunch, he was a bit hot, so we decided to strip him off and put him in the pool… when he was in there he was a little floppy, his eyes rolled to the back of his head”.

I asked if he was excited or shouting or anything?

“No, nothing at all”

When I asked what happened then? They replied:

“We decided to get Mark out of the pool at that time”.

So I asked them to talk me through what happened then. They said:

“We got Mark out of the pool onto his side, he was flipping, his head was turned to one side, his eyes were rolling. So we got the hoist over and decided to put him on a flat bed and wheel him into the changing rooms”

I asked again how he was when all of this was going on?

“He wasn’t responding or anything”

So I asked what happened after that?

“We took him into the changing room. We thought he’d be more comfortable in his wheelchair”

So the support staff decided to dry him and dress him. They hoisted him off the flat bed onto a changing bed. They dried and dressed him and hoisted him upright into his wheelchair. I said was he responding? Their response

“No, no, nothing”.

Carol was telling me this, and even though I’d a very rough outline from Sara before I spoke with Carol I could not really compute what I was hearing.

This is a young man, who was apparently placed into a pool, then something happened. Possibly a seizure, possibly not, no-one could clearly say. But it was clear Mark wasn’t right. So instead of getting him out of the swimming pool and calling for medical assistance immediately, staff decided to take him to the changing rooms, hoist him twice, dry him and change him, and then they thought they’d better call for an ambulance.

Nine years later, Carol is equally perplexed, still:

“I’ve always said my husband ran a football team for young boys, I’ve worked in a school where I’ve witnessed children falling over. If anyone falls to the floor, or is unwell, until you’ve determined what the problem is you can’t move that person at all, until you know what problem is.

Even though they had phones at the pool, the staff decided to go across the yard to inform the day centre manager what had happened.

I’ve got the phone call from the ambulance service. You can hear them saying he’s fighting for his breath, come quick, ask them to come as quickly as possible, Mark is unconscious here”.

Carol recalls that whenever they questioned Mark being unconscious there was “always a bit of a fudge around that… they said they didn’t say that, he was just not responding”.

“The paramedic asked what happened when she arrived and they said he’d had a seizure lasting two minutes”.

I asked Carol whether there were definitely support workers in the pool with Mark and she said that apparently there were two of them. However given there was never any police investigation or inquest, it has to be hard to know for sure.

Mark was taken to hospital:

“When we arrived at hospital, he underwent a scan on his brain. The doctor in charge went up to my husband and said has he had any kind of head trauma? He said this bleed, this haemorrhage is massive.

My husband said not that we’re aware of, we don’t know. The doctor said there’s no sort of bump or bruising to indicate that’s the case but this bleed is so big it’s unsurvivable.

He survived until the Friday. It happened on the Monday and survived until the Friday in an induced state”.

Nine years ago yesterday Mark died. For nine years his parents have been trying to process their grief, while also seeking answers.

“When Mark passed away, you’re looking to find answers as to what actually happened. What we’ve been through for so many years is unbelievable.

They did everything they could to put obstacles in our way. That member of staff isn’t here any more. That one is on annual leave. We cant see to that at the moment”.

Carol Shannon is a remarkably tenacious woman, driven by love, and a desire to get answers, for her son. She has shared with me some of the correspondence she has sent and received in the last nine years.

Less than a week after Mark died Carol wrote to the Regional Director of Service at the Brothers of Charity, Darron Grundy, who was effectively the CEO of Thingwall Hall. Her letter is heart breaking. It reads:

“Our family have been left shocked and devastated by what has happened.

We as family who were totally committed to Mark’s wellbeing for 40 years find it hard to accept the reasoning behind events which occurred that day.

I would go as far as to say there have been numerous occasions when the level of support given to my son has been at best unacceptable, to absolutely appalling.

I have recently brought Mark’s social worker on board, due to my grave concerns around my son’s safety while being supported at Thingwall.

My family cannot come to terms with what has happened and I would like a full investigation to take place as we need answers”.

How did he respond? His letter, sent 11 days later, opens offering condolences and then goes on to claim they’d conducted a full review. It states

“In accordance with the request in your letter dated the 20^th September 2012 we have fully reviewed the circumstances around Mark’s collapse. The review was carried out by Mr Steven Gandy, Health and Safety Manager, and Mr Tom Griffin, Thingwall Area Services and I present Mr Gandy’s review of the circumstances regarding Mark’s collapse on Monday the 14^th September 2012.

I carried out a health and safety orientated review of the general circumstances following Mark Shannon’s collapse at the Swimming Pool and subsequent sad death. The circumstances of Mark’s passing were of natural causes, the review was carried out so as to consider if all procedural aspects of the incident were followed by staff. My finding confirmed that staff followed due protocol and followed the emergency procedure. I would like to thank all the staff involved who assisted in the review as it was a very upsetting time for all concerned. Tom Griffin is speaking to staff affected on an individual basis so as to offer help and support.

All the evidence suggests that there were no grounds to consider that any actions or inactions of staff were contributory to or caused Mark’s collapse. The Health and Safety Manager’s review confirmed that Mark’s support staff were very professional and fully supportive in their response to Mark’s collapse and subsequent admission to hospital. As such can I assure that if there were any reasonable grounds for considering otherwise, that the Brothers of Charity Services would again have pursued and investigated, those grounds fully and exhaustively”.

Wow. In 11 days, a full and extensive review. No information provided of how that was conducted, who was spoken to, what they said. No information provided about how or when Mark collapsed, or indeed whether he did.

I’ve only heard about this a week ago and I can’t stop wondering what happened. Was Mark left on his own in the pool? Did he have a seizure unnoticed? Did Mark have a seizure and end up submerged, leading to a brain haemorrhage? Did he have a seizure noticed and staff realised he’d not been given his medication? Had his medication run out like before? Should they have been in the pool at all? Why on earth didn’t they get Mark out the pool and call an ambulance immediately? From the pool? Why did they go over the yard to inform the manager?

The crassness of a ‘full and exhaustive review’ amounting to a single paragraph, 109 words long, almost half of which (42 words) is thanking staff and detailing their welfare, is beyond my comprehension.

I asked Carol about the safeguarding investigation which Liverpool City Council must have launched, to ensure that nothing untoward had happened that day, and that other service users were safe. When a serious incident happens services have 48 hours to report it to the council, who were the commissioners of Mark’s care.

Thingwall Hall had failed to notify the council of a serious incident, indeed it was only recorded four months later, at Carol Shannon’s request. Four months. There was no safeguarding investigation into the circumstances surrounding Mark’s death, or the earlier concerns raised about his care.

I asked Carol whether the coroner had been informed. She says no, there was no inquest opened, because the hospital doctors said Mark died from natural causes, a haemorrhage.

Eventually after much persistence from Carol, Liverpool City Council commissioned an independent social worker to do a review. His seven page report was finalised in February 2015, over two years after Mark’s death. It concludes:

“There is a clear and significant contradiction of evidence over this issue [whether Mark had a grand mal seizure in the pool or not] which goes to the heart of whether staff at Thingwall Hall acted appropriately or not. I am unsure as to how this can be progressed but it only serves to cause the family anxiety and uncertainty over the events of 09/02/12 [note the inaccurate date] as to what actually happened. It also still leaves the family wondering whether the actions of the staff at Thingwall Hall may have further harmed his medical condition and his chances of recovery.

In conclusion, we have tragic series of events at Thingwall Hall swimming pool on 10/09/12 with a level of uncertainty as to the details of what took place. The conflict between the report of the North West Ambulance Service on what they allege the Thingwall Hall staff told them, and the witness statements that they gave individually, remains a source of anxiety and confusion for the family. An independent investigation soon after the events may have had more success in getting at what actually happened and how appropriate the response by the staff was. It may even have been able to comment on whether the actions themselves may or may not have contributed to his potential to survive the brain haemorrhage. Unfortunately this did not take place, not helped by the Serious Incident Reporting procedure not being adhered to, and through the passage of time and some staff changes the task of ascertaining the truth becomes more difficult. Thingwall Hall and Liverpool City Council should have been more proactive in commissioning an independent inquiry into the events of 10/09/12”.

An independent report, not a full safeguarding inquiry, finding the Council and providers failed to investigate, but not recommending they now do a full inquiry.

I cannot imagine how Carol and Tony Shannon and Mark’s family and friends have coped with the last nine years.

“If people get away with things like this, you know, there’s no hope really. Something went drastically wrong that day.

People say you need to move on, but it’s in your head 24/7. The only time we have respite from it is when we’re asleep, but then you wake up and it’s ‘ping’ and its all there again”.

We have a young, fit and healthy 40 year old man who goes to a day centre for his lunch and an hour’s activity one day and never makes it home.

No police investigation.

No coronial investigation.

No safeguarding investigation.

How can this be?