As you know Bucks County Council voted in March last year to ‘improve’ day care for the less able, the mentally disabled and those with learning difficulties within the county.
As part of these improvements day care centres are to be rationalised into 4 hubs county wide instead of continuing with the present arrangements.
I would like, if you will bear with me, to put a human face on one of these decisions and to try to elevate my sister, who is in a home, above the level of a mere statistic so that you can more easily put yourself into the shoes of people affected.
One of the day centres due to be closed at the end of August is ‘Options’ in Winslow. It is attended on four days every week by my sister Susan Allsop aged 45 who has Down’s Syndrome.
The centre she attends is about three minutes walk from her residence at Shaftesbury Court, Winslow. She is taken to the centre on the mornings of these days by her key worker with a couple of short rests on the way. The staff there know her and the other Shaftesbury Court residents
who attend. Their day there is filled with activities designed to stimulate and interest them such as colouring, cooking, painting, playing games and even simple computer studies where they can print out what they have been shown. This represents a hugely important part of Susan’s life. It is a major factor in her well being. God knows she has little enough going for her as it is. She benefits massively from this local facility as do others.
Susan likes it there and always refers to it in her limited way when I and other members of my family visit her.
Over the past 2 or 3 years I have spent countless hours, had numerous meetings with her doctor and with staff at Shaftesbury Court and had a continuous dialogue with staff and carers there as regards the best treatment for Susan.
Finally we have arrived at a balance of treatment both medically and psychologically which has resulted in Susan being happy and well balanced and enjoying life insofar as anyone can with her condition.
I am worried now by the potential disruption to her well being which would be caused if the daycare plans go ahead. Susan is only one such person in need of our care. There are hundreds of others. I have always judged the quality of society by how we treat our old, our sick and the infirm. Buckinghamshire to date has an exemplary record in that area. Any detraction from that standard in order to save money or ‘rationalise’ should be avoided at all costs. Money allocated to this service ought to be absolutely sacrosanct. Disguising the scheme with the heading ‘improvements’ in this age of obvious public funding austerity is disingenuous.
Any prior intention to sell off or let redundant sites to the highest bidder after they have been closed down would in my opinion have been a wholly reprehensible decision taken at the expense of those unable to express an opinion.
The word ‘hubs’ sounds very progressive but what it represents is massive disruption to the ‘clients’. It means lengthy transport to and from these centres every day. It will mean increased numbers of users at each site, and in some of them an increased feeling of insecurity. Carers who understand their charges would be unable to accompany them safely to the centre. One attendant on a community bus would be no substitute for the existing arrangements at Options.
To cap it all, the County Council, I am informed by letter, is closing down Options at the end of August without even having a replacement venue in place. I can already see that the quality of my sister’s life is coming under threat by these decisions in one way or another.
When my mother, Josephine re-married in 1967 who could have thought that she would give birth to a child with what was described at the time as Mongolism, now known as Down’s syndrome. It is a shock which would floor any parent and plunge them into despair.
Bravely, she and her husband Maurice decided to shoulder their responsibilities and not have Susan adopted but to look after her themselves.
They continued for a number of years with all the attendant difficulties attached to their lives until Susan’s father Maurice died in 1993 at the age of 56. My mother now aged 69 (she was older than her husband) becoming elderly, soldiered on with Susan until the age of 70 or so.
Things became too much for her to cope with alone and having received much counselling from social workers was offered a place for Susan at Shaftesbury Court in Winslow. This led to a near nervous breakdown on her part. To be separated from her beloved daughter was almost
unimaginable for her, but with assurances from members of the family added to those of the authorities she very reluctantly agreed to Susan’s move to Shaftesbury. One of her considerations was the quality and proximity of the day care facilities being offered.
My mother continued to visit Susan every Saturday by bus from Oving to Winslow for the rest of her active life. When cuts were threatened in the past to levels of care, she was active in resisting them by writing to various people including John Major and later on to Tony Blair, and also to the director of Social Services in Aylesbury.
Then in 2009 she lost some of her faculties and could no longer remain in her home in Oving. So she was transferred to an old persons’ home at
Stewkley, – the Orchard.
The responsibility for Susan’s well being, which I had become instrumental in over a long time, had now devolved fully to me. I and others would regularly come up to Stewkley pick up my mother who had severe memory problems by this time, and take her to see Susan on Saturday mornings.
Even though she was practically blind now as well as confused, she and Susan benefitted enormously from the interaction. We also commuted from our homes in Essex on other occasions to deal with hospital appointments for her regarding various health problems. Then in 2010 my mother died. We decided against Susan attending the funeral, recalling the trauma she suffered at her father’s funeral years before. However we brought her along to the gathering afterwards.
Susan is a very sensitive person and although she cannot express herself fully she feels things, is perceptive and emotional. We believe she understands more than people like her are sometimes given credit for.
God forbid that you or any of yours should ever find yourselves in this position. That of being responsible for a dependant person’s well being at a time of life when you are tired and elderly, and worried about how that person will be treated after you have gone. Such was my mother’s permanent feeling and I see now it is becoming mine also.
Below is a poem she wrote which I found after her death, which probably sums up the desperation of those who find themselves in the position described above. I hope it goes some way to putting that human face on the statistic.
Peter Kurton, Brentwood, Essex
I have my dear Susan, my beloved burden,
Now that I’m older it becomes harder to bear,
But still I cannot let go.
I pray to God to give me the strength,
But God does not think much of me,
For every time I pray another trouble I see.
My faith is not very strong,
I rather fear no miracle will be granted to me.
When left on the shelf one relies on onesself
And only takes help grudgingly.
Where will it all end? I can’t comprehend
I live from day to day.
I must think of the future when strangers will nurture
My darling I must leave behind.
I wish God would be kind and take us together
And we’ll be in the quiet earth side by side.
Peace at last.