The System is broken. The update on Beth’s journey and the legal action.
Firstly, I’m going to set some boundaries. I’m knackered. It’s been a long, long fight to get this far and I’m saving some of the energy I’ve have left to pick up where I left off with media campaigning and shouting at people. I am not going to name and shame the individuals, clinicians, and community placements involved both now or historically. I could do so, but I don’t see the value in doing it. Perhaps sooner or later I will, or maybe Beth herself will choose to do so, after all its her life that has been irrevocably damaged for ever. Anyway, it’s not about individual responsibilities.
This time my focus is on The System.
The System is not fit for purpose. That’s not news to anyone. The CQC State of Care report this week confirms it. Since the days of Winterbourne View and even before, campaigners have repeatedly proven this beyond doubt. Numerous reviews continue to prove it. Yet commissioning systems and local authorities throughout the country continue to place vulnerable people into places that their ‘victims’ come to view as prisons, where they feel abandoned by their families and where they see taking their own lives as the better option. Places that fail to help them.
The Children’s Commissioner, The Royal College of Psychiatry, many M.Ps including Labour’s Shadow Sec. of State for Health and Social Care and numerous other bodies are clamouring for changes. Yet the response from Matt Hancock and the Govt so far has been silence.
The System is broken so badly it needs its own secure hospital where it should be locked away from ever again having contact with the vulnerable. Like our loved ones, it cannot be cured. It cannot be healed with sticking plasters and injections. Because this is the way it was born. It’s not a developmental issue – it acts this way because the person with the needs isn’t at the centre of its plans. The System was built this way.
Instead it needs a massive cash investment. It needs freeing from the shackles of having one prescriptive way of dealing with situations. Like Jack on BBC Breakfast the other morning in his museum, it needs its own unique solution. The System needs to be re-designed around the needs of its users and not fitted around what Commissioning and Local Authorities and Government think is best. Battering square pegs into round holes only damages the pegs.
So, finally, after 12 months, the legal action taken against NHSE, Walsall MBC, Walsall CCG and St Andrews Healthcare has concluded. This is the Public Statement as agreed between all parties….
On 21 February 2019 proceedings were issued by Jeremy, the father and litigation friend of Bethany, challenging her prolonged detention at St Andrew’s Healthcare in Northampton from December 2016 to February 2019. This claim was supported by the Equality and Human Rights Commission.
At mediation on 25 September 2019, agreement was reached which has resolved matters, including the claim for damages, without the need for further litigation. St Andrew’s Healthcare and NHS England have accepted that the care provided to Bethany did not always comply with the Mental Health Act Code of Practice and the NICE Guidelines on managing violence and aggression. This affected her wellbeing and made it harder for her to return to live in the community.
Walsall Metropolitan Borough Council (MBC) and NHS Walsall Clinical Commissioning Group (CCG) have accepted that there were unfortunate delays in moving Bethany from what became an unsuitable placement for her. St Andrew’s Healthcare, Walsall MBC, Walsall CCG and NHS England have apologised to Bethany and her parents.
St Andrew’s Healthcare and NHS England have put in place changes to improve the care of people with autistic spectrum disorder including:
a) New policies and systems for monitoring compliance with the MHA Code of Practice in relation to seclusion and long-term segregation; and
b) Improved equality training for staff.
Walsall Council, Walsall CCG and NHS England are also working together to ensure Bethany moves to a bespoke community placement, planning for which has started.
All of the Defendants take the care of people with learning disabilities very seriously and NHS England is currently finalising a review of Bethany’s care to look at what went wrong and what needs to happen to improve care for people with autistic spectrum disorder. This review will be submitted to the Secretary of State for Health and Social Care shortly.
I’m proud of what has been achieved through the exposure of my daughter’s horrific detention in what has finally been admitted to have been care that ‘affected her wellbeing and made it harder for her to return to live in the community.’
That admission alone should be enough to make everyone in The System sit up and think, and hopefully make them act. You made my daughter worse. Because of what The System did to her, she cannot come home yet.
Before Beth entered the ATU back in December 2016, we were told it was necessary in order to help her cope with the struggles she was facing. We were assured that treatment would be provided to help her cope with the anxieties that resulted in her displaying challenging behaviour and at times caused her to want to self-harm. We were told that care from experts in autism, in a suitable therapeutic environment would enable her to return to the community and the family who love her, in as short a time as possible.
It didn’t. It achieved nothing.
It made her worse.
It has made the return to life outside of institutional care further away. Much further.
That will cost Beth. That will cost us. It will cost The System even more vast amounts of money. Since Dec 2016 the failings have already cost them, in my conservative estimation, in excess of £2 million.
The Care Quality Commission agrees that The System does not work. I’m proud of the fact that my exposure of Beth’s failed care led Matt Hancock, the Secretary of State for Health and Social Care, to commission a Thematic Review into Restraint and Seclusion. This review has already led to numerous institutions being placed into special measures and others to be issued with orders to improve conditions. This means other people’s lives have been improved. Beth and I are so pleased that our journeys have led to improvements like this. Beth’s story has caused policy changes and procedural changes some of which have been made public in the post litigation statement.
But what of Bethany’s situation?
As admitted by The System, there were ‘unacceptable delays in moving Bethany from what became an unsuitable environment.’
I know that pressure was applied on The System from high up in Gov’t because of my constant irritation and cage rattling. In late 2018 we were offered an amazing opportunity in a community placement. I will never reveal the name of it because I know how their work has utterly transformed the lives of many people, I personally still speak to parents whose family members thrive there. For us it appeared to offer all of the things that would help Beth recover – lots of contact with animals, a house of her own, experienced, well paid and valued staff and zero reliance on agency workers, knowledge of PDA and Autism to levels we had never experienced before. They also had an ethos of believing that Beth has potential, and a commitment to help her reach it.
But it failed. In less than a week. In just 4 days.
I attribute this to a number of things. It was rushed. There was not time for a properly informed and considered transition. Staff members who went on to work with Beth in the house hadn’t spent enough time with her to build up a trusting relationship. They didn’t know how different experiences affect Beth. They didn’t understand the sensory requirements of Beth and how easily she can become overloaded by noise, changes to routine and environment. They didn’t know how mentally and physically strong Beth is when she digs her heals in. How she never backs down because she doesn’t know how to. I know this rush was due to my media campaign- Beth – I apologise to you for this.
But more than that, they did not know how institutionalised Beth had become. Beth had spent over 2 years in segregation, so suddenly being given the run of a 2-storey house of her own totally freaked her out. She couldn’t cope with interior doors being unlocked. She had lost the ability to understand that different rooms have different functions. This was evidenced by her not accepting that she could sit at a table in a dining room, or sit on the sofa in the lounge to do her activities. She only felt safe sitting on her mattress in her bedroom because that is all she had known for so long. To hear that was, and remains heart-breaking.
She also moved to the new setting without any of her clothes or belongings. Staff picked Beth up from St Andrews on the premise they were taking her out for the day. Instead they took her to an almost empty property and went “Surprise!!! Here is your new house!!” They took her shopping on the very day that she was released to buy all new belongings. This was a massive sensory overload – too many people, big shops, bright lights, smells, choices, noise etc.
All of these things overwhelmed Beth and led to a build up of anxiety and overload. She could not cope and she suffered a breakdown that led to a return to the very cell she had been released from.
The next day she was moved to a temporary setting in an Adolescent PICU (Psychiatric Intensive Care Unit) whilst another more permanent solution was found. We were horrified by Beth’s appearance when we first visited. Once again, she was back in Segregation and Seclusion. She was once again wearing secure clothing and was subjected to a medical cosh. But this time sedatives and anti-psychotics were being used at dosages that left her a zombie. Her speech was slurred and her eyeballs would roll upwards involuntarily, leaving her traumatised at her inability to control her vision. She slept almost continually. She could not stay awake during visits and contact became a short chat followed by simply holding her whilst she slept. I don’t think I have ever cried as much as I did around those first weeks there. I had lost my sparkling, funny, princess.
The unit clearly only expected her to be there a short time and were clearly unhappy as the weeks rolled by. But then things started to change. The unit, being compact with just 2 wards, had a small and fairly constant staff team who were also quite young themselves. Beth made friends of the some of the staff. Mutual bonds formed, trust appeared and Beth felt safe. Her challenging behaviour decreased to almost zero and was only triggered by what she felt were big issues or challenges. Her Responsible Clinician also visited daily and she felt she could trust him too. Gradually she spent more and more time out of seclusion, she amazingly even transitioned to the ward, eventually even sleeping alone in a proper bedroom, in a proper bed, wearing her own pyjamas.
Beth was overjoyed with her progress. My happy child was back again- driven by a desire to impress people and achieve more. She was visibly proud of herself. The unit responded by taking even more positive risks. She went into the grounds, initially into a secure courtyard where her Responsible Clinician played badminton with her, followed by walks in the unsecured grounds. We were able to visit with Beth’s pet dogs and we spend real quality time having picnics and allowing her to exercise the controlling side of her Autism by doing obedience training with her pooches, bliss! Her freedom even progressed to being allowed out in the community in a car. In just 8 short weeks, Beth was in a place in her life that I had not seen for a long time. She was so happy, so proud.
But sadly, an Adolescent Ward couldn’t be a permanent place for Beth. She was over 18. She had to move elsewhere and that meant Adult Services.
As a family we expected that there would be recognition of the progress made and that a setting would be carefully selected where her improvements could be properly maintained and built upon. How utterly naïve we were.
I was horrified when The System delivered the news that Beth would be moving to a Medium Secure Hospital in Wales. Not only that but it wasn’t even Autism specific! Nothing in the brochures supplied nor the pages we found online even spoke of Autism. It was a unit for people with Personality Disorders. NHSE announced they had fully taken over Beth’s care planning and that no longer would a community placement be sought. I warned them what would happen to Beth, how she would enter a spiral of decline if she wasn’t supported.
Beth moved in early summer 2019. She was initially placed in a seclusion room temporarily when first admitted. She felt safe there. Then they stuck her on the main ward. The ward environment terrified her. It was incredibly noisy and, in her words, “Full of very ill, grown women who kick off, scream and cry. I hate it here, I cannot cope.”
Terrified of being assaulted on the ward and overloaded by the noisy environment, she did the only thing she knows works - She escalated her behaviour to get secluded.
And that is where she remains. Locked away again in a cell. No daily access to fresh air. No walks in the grounds nor car rides. She can’t yet have the iPad she bought herself almost 2 years ago, even though it is clearly evidenced in reports that its use de-escalates her and also prevents escalation when used as a distraction. If the weather is good, I can meet with her in a cage outside of her seclusion cell. We had to complain vociferously to get the slime removed which covered the bars and the floors. If the weather is poor, which sadly with the seasons changing is now often, the cage is out of bounds so I have to visit in the seclusion cell. Its grim. Window and door frames with huge bolts remind you constantly that you are imprisoned despite no crimes being committed. If she is upset the door remains locked. This time there isn’t even a hatch to hold her hand through. When I phone her the staff put a phone on the floor in the corridor and Beth lies on the floor to talk to me under the door.
At least this unit recognises that The System has let Beth down by putting her somewhere unsuitable and almost immediately they gave notice to terminate the placement as they cannot get close to meeting Beth’s needs. Sadly, this doesn’t mean she is moving any time soon, as she can’t until a suitable place is available. Even more horrific–few of the staff understand Beth and her autism. Mainly I see disinterested Health Care Assistants whom Beth reports as not wanting to do the juvenile interests her Autism leads her to enjoy, she loves role play, yoga, silly singing or even just engaging in conversation. When not everyone understands fully how to support Beth she ends up with inconsistent care and that confuses her and raises her anxiety in a vicious circle. Staff then blame her for her presentation. Investigations into abuse by staff have had to begin, some have been removed after shouting at her and calling her names. Beth reported they mimic her rocking and her speech. A safeguarding investigation was stopped after Beth was unable to specify the dates the alleged abuse occurred. That’s hard when you don’t have a calendar or a TV that works that might give a clue as to the date. Beth won’t name the staff because of fear of retribution. She’s already been threatened with her phone use being removed.
When I visited Beth the other day, I went into her cell and as I approached her as she sat on the thin mattress on the floor that serves as her bed, I asked her if she wanted to stand up for a hug. She sat there mournfully and flatly replied “I can’t...I’m not allowed to stand up if the door is open.” This type of control is brutal and unnecessary. She is more restricted with the door open than with it shut.
The visit was progressing well, me and Beth were laughing away as I told her how her advocate and I had been so busy chatting away on the drive to see her in Wales, that we drove past the turning to her hospital and continued for almost 10 miles until we realised. Suddenly a nurse or HCA burst in (Its Beth’s room – her ‘house’ if you like, why do they feel they can just burst in like that?) She simply said “Contact has to end. Its lunchtime” I was then rushed out without time to even say goodbye properly. I could hear Beth’s distress as I left the corridor. Outside I challenged the staff member telling her how easily that Beth’s upset could have been avoided simply by telling me and Beth that the visit would end at a particular time, or how just giving 10- or 5-minutes notice would have made a dramatic difference.
Her response? “Oh yes I see that. I realise how important that is for people with ASPERGERS..
Her face when I pointed out Beth doesn’t have Asperger’s is something I won’t forget. She genuinely didn’t appear to know my daughter’s diagnosis…after her being there for 4 months!
A Care Planning meeting took place following my visit the other day and whilst there appears to be some recognition of Beth’s needs, they do not have the skilled staff to facilitate them. I know that their massive reliance on blanket policies regarding risks means her time there will remain shut in Seclusion. This means Beth will continue to remain in the same type of unsuitable and untherapeutic environment that she has spent too long in already. The apologies and the acknowledgements in the public statement mean nothing unless immediate change is made.
Her Diabetes isn’t being properly treated. Only days ago, we were told her blood sugar levels had risen to an unhealthy 15 instead of her usual 7-8, this was partially blamed by the RC on her love of Hot Chocolate with 2 sugars! Not to worry though as he has upped her Metformin to compensate for it!!! I questioned whether instead they had considered using low fat hot chocolate and sweeteners instead. Nobody spoke, everyone just looked guiltily at the floor until the RC chimed in with “We would need to get Beth’s permission for that..”
Really? So The System will happily lock you into a cell and restrict you from using an iPad, or a Duracell battery or a toothbrush or a hairbrush in case you attempt to kill yourself with them but gives you complete autonomy when choosing to kill yourself by abusing your body because you don’t understand diabetes?
She also receives no dental treatment. She’s complained that she is struggling to read the story books she loves because she hasn’t been given the dyslexia support tools she requires. Some staff will read to her but others won’t saying it’s not their job to do so. Beth also has an ingrowing toenail that remains untreated and painful – another trigger. Her hair has not been cut in 3 years. Her lack of menstruation still isn’t being investigated and her weight remains obese. Unable to exercise, she has no muscle at all and this causes the pain she already experiences due to hypermobility to be exacerbated.
She is utterly neglected.
So, despite nearly 3 years of watching my child live in seclusion in cells that are harming her, despite promises, apologies and litigation, despite CQC thematic reviews, despite a damning internal investigation by the NHS ordered by Matt Hancock, whose full outcome I eagerly await (I’ve seen the drafts) nothing at all has changed for Bethany.
Because The System does not work.
And it’s called Care?
Its utterly heart-breaking for me and her family to concede that Beth has been so traumatised and broken by her experiences that for now she would not be able to cope with living in the community. I’ve described Beth’s anxiety levels before but I will repeat it here for clarity…. Imagine being a young woman alone in a multi-storey car park, late at night, in a city you’re not familiar with. Suddenly the lights go out and you hear footsteps approaching you rapidly from behind…. That’s Beth’s normal level of anxiety. It takes only the slightest thing to burst the dam wall that holds back the fight or flight response. She will kill herself or hurt someone else. She hasn’t had any help with these feelings…just conditions that have reinforced her mindset.
There is however a beacon of hope. A place exists that consists of individual suites within a hospital setting. I’ve visited and its awesome. Somewhere that isn’t classed as either medium or low secure. A purpose-built autism specific setting with acoustic deadening that keeps the entire building calm and low stimulus. The ‘flats’ are the patient’s own homes where there are no blanket policies on what a person can or cannot have access to. There is no need for staff sitting on chairs in corridors outside locked doors 24/7. Instead totally individualised care plans allow for items to be included. I saw flats where there were laptops, scissors, kettles and all manner of normally banned items. I met specialist staff who provide the therapies and opportunities that enable people like Beth to move as quickly as possible to the community again. They recognise the importance of family involvement and the fact that parents are as much, if not more so, the experts on the individual. I’ve been asked to support staff to understand Beth’s personality and presentation and I look forward to doing this. The setting includes individual gardens for each patient in which they can even have items such as exercise equipment like trampolines. Beds don’t need to be bean bags on the floor or thin mattresses because proper planning has gone into making real beds safe items. There are bungalows in the grounds that some patients can live in whilst transitioning back to the community. I can’t wait.
But sadly, we have to.
We are told that it could be 9 months before she goes there. Not because there needs to be that long a wait but because there are other patients whose discharges are delayed due to issues further along the line. I don’t know the specifics but it will be things like lack of available community settings, lack of funding agreements between commissioning and other such blockages. It’s utterly mindless that people who no longer need the service cannot move on so others like Beth can receive the help needed so desperately.
But for now, my little caged canary sits singing to herself. Occasionally screaming to be let out to fly free. So wrong.
But then as we know,
The System is broken and unfit for purpose.
Jeremy, Bethany’s Dad. October 2019.