February 27, 2016 by dontbringlulubook
A 15 year old autistic boy in a psychiatric unit in Woking in southern Britain believes he’s in prison.
Matthew Garnett has been in the unit for a year because there’s no proper place for him.
The teenager is four hours from his home.
Now his parents have launched a petition to try and find him a room.
The Mail newspaper reports that the boy broke his wrist in the Cygnet Unit and that the family claim there was a delay in treatment.
The story mirrors that of Louise Onions’, daughter of Ron and Doris Onions. Lulu who had autistic traits was looked after for most of her life by East Sussex County Council.
But there was constant anxiety over her future, often driven by the social services budget as this letter shows:
The darkest hour came when Louise’s behaviour deteriorated so much that there was the possibility of her being sectioned. She had been responsible for attacks on staff in the unit at Telling near Hastings in East Sussex.
This was followed by a financial move by East Sussex County Council to shift the responsibility for Louise’s budget to the Rother and Hastings Trust.
This stressful period was detailed in ‘Don’t Bring Lulu; Her Family’s Tale of Trial and Triumph,’ at this point by Ron Onions who made it clear that he regarded the budgetary mistake as firmly in the health authority’s court.
There is a saying that August is a cruel month. On my birthday,
the 27th, I received a letter from the Adult Social Care Department
of the county council. It was from someone new to us, a social
worker named Cherrill Lawless. She wanted to meet us – as she
said, to ‘gather your views on Louise’s needs’. I rang her and she
asked, ‘Do you know what this is about?’ When I said I did not,
she announced that she had been asked to find alternative accommodation
for our daughter. I could not believe it.
I told Mrs Lawless that we would do everything we could to
resist any attempt to move Lulu from Pedros. We arranged to meet
her at her office in St. Leonard’s in three days’ time. In preparation
for that, I did a ring-around to see who else knew about the
plan to move Louise. I spoke to Owen Nolan, the manager at
Pedros. He was taken aback. He knew nothing. Neither did the rest
of his staff. Next I spoke to senior staff at the West Kent and
Medway NHS Trust. We knew them well, as they were responsible
for eleven care homes in East Sussex, including Pedros, and we
met them from time to time to talk about various matters concerning
Lulu’s well-being. They, too, were unaware of any intention to move
our daughter, but they did reveal that they had been in dispute with
representatives of East Sussex County Council over the rising cost
of keeping her at Pedros.
So I called County Hall and said I wished to make a formal
complaint about what was happening to Lulu. They sent me details
of their complaints procedure, which set out three stages we could
pursue if need be, and then, if the matter was still unresolved, we
could take our case to the ombudsman.
In our first official written complaint, I hammered the point that
the unwelcome news about Louise was ‘delivered out of the blue
by someone with whom we had had no previous dealings and not
by one of the principal members of the Pedros staff with whom
we enjoy a very good relationship or by one of the two principals
of the West Kent and Medway Trust with whom we have met many
times and maintain regular contact’.
Our complaint went on to say that Pedros seemed ideal to us,
with attractive furnishings and a small enclosed garden at the rear,
and that while she had been there, Louise had been able to resume
a full programme of outside activities under the care and supervision
of a dedicated staff. In due course, there had been some mental
health problems, and a period had ensued when our visits were
difficult, to say the least, but the observations and recommendations
of a visiting psychiatrist had seemed to work wonders, and
recent visits had been a pleasure.
Louise is now 45 and my wife and I are in our seventies. There
could never have been an ideal time to inform us that there
was a plan to remove Louise from Pedros, but unfortunately
it came after a stressful year during which my wife was diagnosed
with cancer and has undergone six months of
chemotherapy treatment. She is now in remission but remains
under medical supervision.
In trying to find reasons why Louise should leave Pedros,
I learned that there had been a dispute between West Kent
and County Hall over the amount of money needed to sustain
our daughter after her first year there.
As I understood it, the initial amount was £70,000 a year,
which I believed to be the budget figure for each of the other
residents at Pedros. Amazingly, in Louise’s case this figure had
risen to £250,000 going into the second year. That is a staggering
350 per cent increase. Surely someone should be held
to account for what I can only describe as a budgetary bungle
rather than simply require Louise – the innocent party – to
pay the price.
I believe that there was eventually some kind of compromise
between West Kent and the County Council which will
sustain Louise at Pedros until this November. Fortuitously, at
the end of November, a new contractor will be announced
to succeed West Kent and Medway in the running of Pedros
and the other ten homes in the area. This seems to be the
proper opportunity to resolve calmly issues like the funding
of Louise’s accommodation in a purpose-built facility, which
has proved so beneficial, both to her and her carers, rather
than subjecting her to yet another move which cannot improve
– or, indeed match – her present circumstances and will have
the deleterious effects that have occurred in the past.
At this point, I would commend to you the minutes of one
of the consultation meetings that took place in June about
the re-tendering of the West Kent and Medway contract.
Projects Manager Martyn Yeats assured parents and carers that
there was no agenda to close homes or to move people to
other places. This, he said, is not a cost-saving exercise.
In the light of these reassuring remarks, the decision to
find alternative accommodation for Louise seems more than
just ill-considered. It is cruel and we will resist it to the last,
using whatever assistance and resources we can muster.