Remembering Joanna

Until last month I’d never attended an inquest without already making contact with the bereaved person’s family, to try and get to know them a little. As Thomas Rawnsley’s inquest came to a close, I moved straight to Joanna Bailey’s inquest as it was half the way through.

I have written a number of posts that mention Joanna and her inquest, see:

I really wanted to speak with Joanna’s family to get more of a sense of who she was to share with you. This afternoon I had the opportunity to speak with Keith, Joanna’s Dad. He was also able to share some notes with me, and I’ve written this post to share some of what I learned.

What was Joanna like?

Joanna was a very kind and loving girl.

Keith starts our conversation by focusing upon this and ends it by coming back mentioning what a kind and loving person Joanna was.

I have to say that I like everything that Keith tells me about Joanna, she sounds spirited, and determined. Keith described how Joanna had mild to moderate learning disabilities, she tried mainstream school but didn’t get on too well, and was statemented, eventually moving to a special school in Havering. She was quite happy there and got on ok.

Keith recalls that Joanna:

‘wanted to do normal things teenagers do… she wanted to go out but she didn’t have many friends locally’.

That didn’t stop Joanna wanting to be independent. She saw her brother becoming more independent and she craved that independence too.

Joanna loved music, she particularly liked Michael Jackson, was fond of a disco or two and karaoke. Despite this, Keith recalled that Joanna didn’t say an awful lot.

Keith felt that Joanna often appeared able to mask her difficulties, and in fact she appeared to understand far more than she actually did. He describes how she was able to read reasonably well and she could write, these things were often used as indicators of her being more independent than she were. Keith points out that Joanna could read you a story out of a newspaper, but if you asked her what it was about, her comprehension skills were such that she’d not be able to explain it to you.

Keith doesn’t offer this to highlight deficiencies in Joanna, so much as to highlight her vulnerability if people failed to understand her needs. Indeed, he is convinced that many people failed to appreciate how vulnerable Joanna was, or how much support she needed to be independent.  He recalls a psychologist conducting a mental age assessment, being so surprised by the results returning and conducting it again, still to find that Joanna’s comprehension was that of an 8 or 9 year old.

There was some suggestion shortly before her death that Joanna might have been autistic. It’s been suggested that many autistic girls and women become adept at what are described as masking behaviours, which hide the difficulties they face in executive functioning. Keith is clear that the staff at Jeesal Cawston Park, where Joanna died, did not seem to understand his daughter. They did not appear to take the time to get to know her.

Keith references CPA Meeting minutes which feature the same sentence on a number of occasions reinforcing the need for staff to speak clearly and simply with Joanna to ensure she understands:

‘…staff were being told to be very careful, make sure explain fully because Joanna doesn’t understand. In fact when you look at the CPA reports they’re the same thing, they have different dates, but it’s almost like the whole thing is carbon copied and there are just a few words changed or added in each time’.

Joanna’s seizures

Back tracking a little, as a teenager Joanna craved her independence but in a cruel twist of fate, she started having seizures, as she left school and started to branch out into the wider world. Keith comments that

‘they practically ruined her life’.

Joanna was diagnosed with two types of seizures, epileptic and non-epileptic seizures. She was treated at the National Neurology Hospital in London and was a patient of Professor Walker.

We discussed the evidence given at Joanna’s inquest of some staff not believing that Joanna’s non-epileptic seizures were real. Keith recalled how Professor Walker had explained to them that unless you happen to be wearing brainwave sensors at the time of a seizure, to monitor activity in the brain, it’s impossible to tell what type of seizure someone is having.

Perhaps most importantly he also impressed upon them that ‘all seizures should be treated the same, as emergencies’.

Keith recalls the balancing act of trying to allow Joanna her much craved independence, alongside her total vulnerability when she had a seizure. Eventually, as Joanna’s seizures worsened, he described how she could only go out with both her parents, or alternatively stay home with one of them while the other went out.  

Joanna secures her independence

Keith and his wife, Jean, were going on holiday and Joanna didn’t want to go with them. Joanna got to stay in a respite centre run by the council for a week, they enjoyed their holiday and Joanna loved her time there and didn’t want to return home when they got back.

Joanna’s parents agreed to pay for Joanna to stay at the respite centre, which worked fine for a couple of months until the bed was required for someone else. At that point Joanna moved to a residential care home called The Chase.

‘It was excellent, there were people her own age. There was one girl she got on really well with, she became a close friend, she had the bedroom next door’.

Joanna had just short of five very happy years at The Chase. Keith is very quick to praise the provision there:

‘Things went really well… she had seizures but not as many, and she was happy. They went out and about, they visited theatres in the West End, she loved it, she loved music and went on holiday’.

Joanna’s life seemed to be everything she’d craved and longed for.

Loss

Then bereavement struck. Keith describes how the loss of Joanna’s grandparents had a devastating impact on Joanna and her health:

‘First her Grandmother died, she took that pretty bad… then a year or so later her Grandad died, and she took that even worse’.

When Joanna was distressed her seizures would increase. Keith recalls collecting Joanna from hospital after a seizure, and after being discharged she said to him that:

‘Dad I don’t feel right, I’m seeing and hearing things, I need to see my psychiatrist’.

The manager at the home said that they’d arrange an appointment through the learning disability centre. What followed was an unacceptable, but now well familiar, delay. First up Joanna was promised an appointment in three weeks, then once that appointment was due a letter arrived saying due to government cut backs they had to reduce the number of psychiatrists and Joanna would have to wait another month. Sure enough, a month goes by and then another letter the same, and a further month long wait.

All this time Joanna was being kept at home for her own safety. Keith recalls how she’d been unwell for three months, she wasn’t seeing anybody, she’d explained how unwell she was and she needed help and

‘then she went and did something really silly’.

Joanna’s job in her home was to unload the dishwasher (which shouldn’t have had sharp knives in it). Joanna smuggled a knife up to her bedroom, returning downstairs later that night at about 22:15 with the knife in her stomach. She opened her dressing gown and asked staff to remove the knife because she couldn’t get to sleep.

Challenging behaviour

Joanna was rushed to hospital for emergency surgery, and then finally ended up receiving help from mental health professionals. She was sectioned and moved to Goodmayes Hospital. Again Keith is quick to point out that they were ‘quite good there’ and Joanna appeared to be getting on very well.

Things were looking up, Joanna was feeling better about life, she was taken off her section, and there was talk about whether she was fit to return to her residential care home. It was decided that rather than return straight home, they’d be a trial period where Joanna would attend the day centre that the home ran, to see whether she was well enough to return home.

Clearly something of the trial nature wasn’t communicated to Joanna in a way that she understood. The day release at the day centre went swimmingly, everyone was content, but when it was time for her friends to return home and for Joanna to return to the hospital she refused.

Joanna wanted to go back to her home instead. She sat down on the floor of the centre and refused to move. I loved this story, what spirit Joanna had. If people won’t listen to me and meet my request to return home I’ll just sit here and perform a one woman sit in protest, in the hope that they’ll realise the mistake they’re making and let me go home.

Except Joanna had the label of learning disability and so her protest couldn’t be viewed as a creative response to get her message across, instead it was seen as ‘challenging behaviour’.

The day centre closed at 15:30, her parents were called at 9pm and she was still there. The Police had been called but wouldn’t intervene because Joanna was in a private place and safe. Joanna held her stance. The carers eventually arranged for two doctors to attend, and at 2am the following morning Joanna was sectioned again and the Police were called to take her back to the hospital.

I just want to take a moment to express how enraging this situation is. This is a young woman who is communicating her needs and wishes, and when they don’t fit the ‘system’ she is banged away. What was Joanna’s crime? To sit down on the floor. Keith explains how it made perfect sense in Joanna’s mind, that she thought if she did this then she’d be able to go back to where she lived, and her housemates.

A few weeks later Goodmayes Hospital decided that Joanna had challenging behaviour and she was sent into Cygnet Care at Beckton. Keith recalls how this placement had a very mixed group of patients, and that Joanna was mocked and bullied.

Move to Jeesal Cawston Park

Keith shares that they hardly had any notification of Joanna being moved. They were called to a meeting at 3pm on a Thursday.

‘Before the meeting started we saw Joanna and she said ‘Dad I don’t know what’s going on but they’ve been counting the stuff in my room’. I tried to reassure her that it was probably just a stock check but we had no idea’.

In the meeting that followed Keith and Jean were informed that Joanna was being moved that evening to another place up in Norfolk. He recalls protesting that was a long way and asking whether they really couldn’t find anywhere closer but this place, Jeesal Cawston Park

‘was deemed good for her challenging behaviour’.

Joanna didn’t see her parents after the meeting, nor was she in the meeting. Keith was relieved that they didn’t see Joanna afterwards on this occasion because he thought if they’d told her that she would have been worried and likely to have had a seizure. I can’t really understand how it can ever be deemed acceptable practice for parents to be informed hours before a move, and the person moving to not be told at all, until they are being ushered out of the place that they thought was their home. There must have been a better way.

Keith recalls:

‘They took her at about 18:30, it would have been extremely hard for her. It was late October, it would have been dark, they were dark nights. She was taken in a private ambulance with members of staff up to Jeesals. It’s nearer to Cromer than Norwich. It would have been a 3.5 hour, 4 hour trip, maybe longer if you account for getting out of London in rush hour… we weren’t allowed to see her then for a couple of weeks’.

This is another practice that I don’t understand. It’s inhumane to my mind to suggest someone will ‘settle in’ to an unfamiliar environment better if they have no contact with their friends, family and loved ones.

If your environment is that brutal that the comfort of those who love you is likely to be too distressing, then perhaps you should stop and think about the appropriateness of the environment you’re providing.

Likewise with the refusal to allow families to see someone’s bedroom. Keith is clear that if they’d been allowed to see Joanna’s bedroom he’d have noticed that her CPAP machine wasn’t being used.

The family’s barrister Oliver Lewis asked the nurse manager at Joanna’s inquest about the policy preventing families visiting their loved one’s bedrooms and this was her response:

Every time I hear this sort of othering, painting residents as dangerous beasts who might attack at any moment, I can’t help wondering whether the very environment that is being so closely guarded is what creates such situations. Where else, other than prisons, are people only allowed to meet with family members in a visitors room, and not in their own space?

Joanna’s time at Jeesal Cawston Park

I’m not going to go into detail about how Joanna died here. What I will stress are a few things I heard Keith say under oath, and again today. That Joanna’s parents would attend meetings regularly, that they’d ask about Joanna’s seizures and were told ‘they’re ok, no problem at all’.

That no-one ever mentioned to them that there were problems with Joanna wearing her CPAP machine. Keith is at pains to point out that Joanna had never refused to wear her machine, when living at home, in her residential care home, or in hospital, they’d never been a problem. The chip from the machine would be analysed regularly and:

‘Joanna got help every night to put it on, she never refused to wear it. There had never been a problem, always worn 95% of time, she was like a star pupil’.

Keith recalls asking if everything was ok with Joanna’s mask and the response being always the same, ‘yeh, that’s all fine’.

On the couple of occasions he was told there was a problem or something was broken, he contacted the National Neurology Hospital and arranged for spare parts to be sent out.

We touched on the scorn associated with Joanna’s parents bringing her MacDonalds on their fortnightly visit. The ‘gym’ at the hospital that had one piece of gym equipment, and that Joanna ‘went to the gym for a disco, not for exercise, they’d just do parties and disco in the gym’.

Keith described his dismay of collecting Joanna’s CPAP machine after she died:

‘We went to get the machine to take back to the National Hospital, I said to my wife this hasn’t been used, the mouthpiece wasn’t used at all’.

The analysis of the data chip showed that Joanna’s CPAP machine had only been used for 29 nights out of the last 209 nights of her life. The last time it was used was 19 January and Joanna died on 28 April 2018.

Keith recalls how the Coroner initially said at one of the pre-inquest review hearings ‘this is a big piece of medical equipment at the side of the bed, you can’t mistake it, didn’t anyone ask what it’s for?’.

Neglectful non-neglect

In the end the Coroner ruled that Joanna had died as a result of Sudden Unexplained Death in Epilepsy (SUDEP) and refused to leave a neglect verdict to the jury.

‘We were hoping for neglect to be on death certificate, because it clearly was’.

We discuss how difficult, impossible even, it seems to be for coroners to investigate the deaths of learning disabled people and identify neglect. Keith tells me about the long police investigation, it lasted 9 months. He says the Police were bitterly disappointed that they couldn’t prosecute because the neglect at that place was terrible. Staff lied in their statements, tried to hide the CCTV footage, were generally evasive. Keith was hopeful that there would be gross negligence manslaughter charges, not because he wants staff members to take the blame, but because someone should be held accountable.

The torturous logic was on display once again. Apparently CPS didn’t feel there was a reasonable chance of successful prosecution because while it was clear no-one had been near Joanna’s bedroom for 2.5 hours, they said if they’d gone into her room and she’d just died and they refused to do CPR then they could have been prosecuted…. but because they didn’t go into her room, they’d not seen her in time.

We briefly touched on whether the CPS had evidence from the Paramedic whose evidence was that Joanna was still warm to the touch on their arrival, and definitely worth trying to get her back.

Apparently there was some further caveat about the need for Joanna’s CPAP machine to be used never making it into her Jeesal Cawston Park care plans; so it seems if providers paperwork is that woefully inadequate they then can’t be held accountable because there’s no record to say it should be used. This makes my brain ache in the illogicality of it all. If Joanna’s care plan had stated she should wear the CPAP machine (which it should have and only didn’t because of their errors) then Police could have prosecuted for not following the careplan, but because the care planning was so poor they’re off the hook.

Keith said they’d heard that the NMC would be looking at Annita Nyabunze’s fitness to practice after the inquest was complete. They said they might talk to her, or she may be suspended, or rarely her licence may be withdrawn.

‘We think nurses do a wonderful job, especially at the moment, but they were all trained in CPR, but she was a registered nurse, you’d expect her to do the right thing and try, and she did nothing and walked away and told the others to get on with it. That to me says she should be struck off, not just given a telling off.

Keith simply concludes:

‘I hope they shut the place down’.

Value and worth

We conclude our conversation by reflecting on the value and worth attached to the lives of learning disabled people in our society. Keith mentions how people with learning disabilities are treated as though they’ve got no worth. Keith and Jean have run a disabled people’s club for the last 8 years, it’s a registered charity, Keith is the treasurer and caretaker, Jean the secretary and together with 8 volunteers they look after a hall built with donations ‘40 odd years ago’. They rent the hall out and after paying the bills they use the profits to take their ’50 odd members’ out for treats.

Keith recalls days out at the seaside in the summer, discos in the hall (which Joanna loved), fish and chip suppers day outings. His voice gets reflective and he says:

‘It nearly brings tears to your eyes, because when we come back on the coach with them, they’ll give you a hug and say that they really enjoyed today. Honestly, they don’t want for anything except an outing and of course plenty of food <chuckles>, an ice-cream or fish and chips, but then everyone likes that’.

Keith continues

‘All this about challenging behaviour, I think half the time it’s because they don’t want to get to know them. Joanna was a very kind, loving girl, had her problems as we know, epilepsy caused her some problems, but when she was fit and well she would do anything for anybody’.

He recalls Joanna’s fundraising efforts, she did a sponsored swim for Children in Need when she lived at home, about 9 or 10 years ago. He proudly remembers that Joanna was quite a good swimmer.

‘Even when she was locked up in hospitals, if it was Children in Need time she did a sponsored silence and raised money.

Before she died she was planning to do a Children in Need tombola stall.

She was very good in that way, she’d help anybody really’.

4 comments on “Remembering Joanna”

Yvonne Morris says:

Such a lovely looking girl, so sad about the seizures, she was an example to everyone one in giving and caring, it’s so sad that there are people who do not care anymore only for themselves.

Naomi R Pinson says:

I am so sorry for Joanna’s parents. I am retired now, but worked in the field of psychiatric rehab in the US for about 25 years. I worked in Direct Care positions, everything from group homes to hospital, and in all positions. Partly this was a good fit for me because as a teen I went homeless and wound up in psychiatric hospitals for my entire sixteenth and seventeenth year. And partly it’s because I have daughter who has developmental delays. From the moment she was diagnosed until today it has been a constant uphill struggle. I identified especially with how Joanna’s behavior was called “challenging” when the only thing challenging about it was that it was not compliant. How can we expect people in care to simultaneously self advocate and at the same time be compliant all the time? .Hurrah for Joanna! I am beyond sad about her fate and the fate of so many who die before their time, but understand the mechanism: Neglect. I have seen it, not only in my jobs, but also with my own dear child, OVER AND OVER! This, despite care plans that provide nursing care and outreach services (she lives independently with supports.) Last year she almost died because of this neglect.

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