‘Tell them this is brilliant… I never thought this would happen’

Bernadette’s story was never planned to be read out loud but, given she is visually impaired this is how I have shared it with her… and it is a story that needs to be heard.

In another place, Bernadette may have been locked away for the rest of her life; but on this recovery journey, I find hope. When we first met in 2015 Bernadette was living in a small residential placement, anticipating moving into her own home as part of Lambeth Living Well Collaborative’s innovative IPSA (Integrated Personalised Support Alliance) – now part of the Living Well Network Alliance.

What moves me? In the 13 years she spent on secure wards (in five different hospitals) the maximum unescorted leave Bernadette was granted was for three hours a day. She found it “liberating to have a look around the shops, go to McDonalds, Greggs, go for pizza… in the summer I would go for a walk and just sit there in the warmth …

It’s a very different  Bernadette who I speak to on the phone on Friday , September 25, 2020 at home in her Streatham flat … joyous that she had been discharged back to her GP.

“It feels very very liberating,” she says reflecting on the three hours hospital leave of yore.

“I’ve worked hard to get from claustrophobic secure wards in hospitals (2000-2013) a care home, and finally a studio flat adapted for me as I’m partially sighted. I took courses on tenancy, eating well for less and being a good employer for working with my PA. Finally, I am free having been granted an absolute discharge from the Restricted section of the Mental Health Act.  Who’d have thought I’d ever start college and holiday in Jamaica to meet my mum’s family.. and be discharged back to my GP.”

It is indeed a mega moment in the milestones …

“Bernadette has done really well and as a result has been discharged from our ART (Alliance Rehabilitation Team) services to the care of her GP,” says care coordinator Lorane Swaby. “ She has a lot of support in regards to her independence and that seems to be working well for her.  Her trip to Jamaica was several years ago and she is hoping to go back… it’s  yet to be accomplished but has remained a goal of hers.

“I don’t think the IPSA could have done anything differently in regards to the support she is receiving.  Mentally she is well and has been well for some years now. Rish (Rishad Banno, her support worker)  will  still be involved with her and there will be a social care review with her PA once a year. Her family are supportive of her so she should be fine.”

Rish who hasn’t  been working with her for long, and mostly during Covid, says “Bernadette seems to have adjusted well to her new way of living, though has missed her more social activities and studying.” She recently returned to college. He adds that her PA regularly updates them on what is going on for her, “and they seem to have a great relationship”.

Bernadette said it was hard to say goodbye to Lorane, “but I know that’s what I had to do”. It takes her back to 2012 when she took a leap of faith that set her on the road to her Streatham home.

That was the year that was

On the phone Bernadette charts the years since she moved into her flat as part of the BRiL  (Brokerage and Resettlement in Lambeth) project, which is increasing the availability of independent accommodation for those who are ready to move on. She praises   Thames Reach property manager Andre – who not only sources the properties on the open market – but works with  ART to ensure all’s well for residents. “He’s been really supportive when I wanted to put pictures up and when I had issues with my washing machine, I just phone him if any problems, “ she adds. Below are her highlights of the past four years.

2016 – more problems with her eyes, further restrictions relaxed re the Mental Health Act,  trip to Jamaica with her mum to meet her family and link up with old friends .

2017 – ecstatic when keyworker Mary assured her she wasn’t too old (then 59) to go to college and she has been studying Maths and English at the Clapham Centre (as part of  Lambeth College’s supported learning) ever since.

2018 – “Nothing much happened,” she says wryly,   “tho I stayed in a little hotel in east London for my birthday in August and branched out with activities with the Derby & Joan over 55s, MYsocial and Age UK”.

2019 – “I had other physical problems that sorted themselves, but I am pleased that I have cut down on my meds over time for diabetes and blood pressure and stopped taking the risperidone.

“The best part was being taken off all sections of the Mental Health Act . I bought a new bed, blinds and curtains for my kitchen doorway and I went to Tenerife for Christmas with my older sister and children, that was really living.”

Bernadette from the archives

A survivor from the outset, Bernadette was born in 1958, a year after her mother arrived in the UK from Jamaica. She was born blind, with a hole in her heart and with mild learning disabilities. “I had a cornea-graph op when I was a toddler and that was exciting… when I woke up I could see for the first time in my life,” she recounts as if it were yesterday. “The sun was shining through the window, I had to wear a pair of mittens so I couldn’t scratch my eyes and I saw that they had blue ribbon.”

She has been institutionalised most of her life. “I lived in a home outside London between the ages of three and six, I was glad to get out; it felt like I was being treated badly and I was longing for my mum and she came to get me.

“Life got a bit better around seven when I went to a school for the blind, then later a ‘physically handicapped’ school. “I was used to being with blind and partially sighted kids and had to adapt quickly to kids in wheelchairs.” Later teenage years got more difficult and she was expelled from two schools.

The challenging years

Years followed in day centres, a sheltered workshop and staying at home. “I felt like I wished I’d had a proper job.” The work scheme in the 1980s helped her to feel valued, she trained in telephony and was really enjoying herself, ” until someone caught me drinking shandy and I was sacked”.

The death of her friend, an uncle and her dad in 1989 was pivotal. “I was drinking and didn’t know what I was doing and ended up in prison,” she says of the years that followed as her life spiralled out of control. There was no support as she moved to a hostel and then into her own flat. “It was two and a half weeks in my flat that I felt I became mentally unwell, something serious happened and I didn’t know it had happened. I was arrested and bailed to the Maudsley. I thought I would go back to prison but ended up in five different hospitals.”

There were numerous suicide attempts, a diagnosis of recurrent depression and disocial personality disorder. She was also diagnosed with glaucoma and diabetes.

“There was nothing to do… I had to break the cycle. It was going to the therapies and wanting to see my family (her mum, brother and four sisters). It was tough, but I worried about vegetating.”

Something changed in 2012. “I started to feel better about myself. I started to read books about depression and diabetes.” Bernadette’s then care coordinator broached the possibility of her moving on after numerous tribunals and a conditional discharge in 2013. “It felt a bit strange after 13 years”, but after the claustrophobia of life on wards (the maximum with up to 24 women) Bernadette wanted her own space. It started with the placement, then ensuring the appropriate support to take the next steps.

A place to call home

“I don’t like sharing, I need a reasonable size space that’s nice and cosy, a space to call my own,” Bernadette told me and over the weeks that dream unfolds.  I do a reccie with Thames Reach property manager Andre and when I visit what is to be Bernadette’s place, the enormity of the change she faces really comes home.

IPSA  – sees voluntary organisations Thames Reach and Certitude, South London and Maudsley NHS Foundation Trust (SLaM), Lambeth Clinical Commissioning Group (CCG) now NHS South East London CCG; and  Lambeth Council , now working together as  the Living Well Network Alliance under a 7-year contract   – a relatively new approach in the health and voluntary care sector.

Bernadette’s personalised package aims to deliver the Collaborative’s Big 3 Outcomes for people accessing services –

To recover and stay well

To make their own choices

Participate on an equal footing in daily life

In practice that means a dedicated multi-disciplinary team, that puts the individual and their assets at its heart.

IPSA’s specialised team in 2016

Bernadette is impressed with this way of working. “It’s like an umbrella, and people have been working well together.”

She speaks highly of Mary her support worker (ART) who along with a highly specialised team has ensured her move has been as stress free as possible. This has included organising adaptations to the property, helping Bernadette employ a personal assistant (PA) and selecting furniture. Bernadette says Mary’s sense of humour and ability to respond when things don’t go according to plan have been crucial.

Bernadette has accessed courses, including – It’s Your Move, to help her understand her tenancy, How to be a good Employer, for work with her PA, and Eating Well for Less.

Caroline, Bernadette’s social worker and placement review officer says Bernadette’s case illustrates the value of having access through one team, which has assisted her transition and ensured her well-being.

“She has been supported to employ her PA and to have Telecare (monitoring service) installed in her flat through her social worker and support planner broker. Her psychiatrist and care coordinator have supported her with her mental health needs and finding activities in the community for her to do. The occupational therapist has advocated for the move into her flat (supporting her team to choose the right flat, providing her with cooking sessions and suggesting strategies and adaptations to the property).”

Caroline adds that the PA agency has supported her to employ a PA of her choice and runs the ‘good employer’ course, which she has found useful. Her support worker and PA have helped Bernadette set up her bills and feel settled in her new home.

“Myself and her support worker have worked really hard to ensure that she feels ready and prepared for the move into independent accommodation. It’s been really useful to have a team around us to draw knowledge and skills from. Of course, the most important person in this all has been Bernadette. It’s been really good to work with Bernadette because she has been so motivated to change, is open to new ideas and wants to be independent.”

Journey’s end

I visited Bernadette a number of times after she moved into the bright, cosy studio flat. It was  working well with her PA, “she helps me cook, clean, shop and attend hospital appointments”, she says.

I ask Bernadette what photograph would best illustrate her home for the story and she suggests the brightly coloured cushion that she is holding, “bright colours represent me, bright makes me happy”.

I ask her what shall I tell people in meetings when I present this story?

“Tell them this is brilliant, I never thought this would happen, it’s a real achievement for me…

Family is important

I came out through the other side

I am living life to the full

and getting the support I need .”

It’s September and Bernadette reflects on her  journey: “It was hard, a struggle and now in 2020 it’s marvelous, magnificent and still BRiLliant. I’m looking forward to going on hols again… maybe end of 2021.”

– By completion of the project 20 people will have moved into BRiL properties, 17 people have been housed to date.

Karen Hooper

One thought on “‘Tell them this is brilliant… I never thought this would happen’

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