Carer’s Stories

My Story so far.

At the age of 28 I gave birth to my second child a daughter who was diagnosed with Down syndrome.  From the moment she was born my husband could not accept her as his own and tormented by his disbelief he became paranoid which a few years later developed into schizophrenia.  He was sectioned many times over the next 30 years.

The baby had various other problems including a heart condition.  She was unable to walk unaided until she was almost 4 years old due to poor muscle development.  However I made full use of her inability to run about by teaching her to read using hundreds of flash cards and pictures.  She could recognise and find the matching pictures and words before she could say them.  By the time she went to school she could read over 500 words. Almost 35 years later it seems educating her was the biggest mistake I ever made.

She attended a special school and had a great education for someone of limited ability. She attended a school for severe disability and was monitored regularly to see if she could go to the other special school in the locality which was for Moderate learning disability but she was never deemed good enough.  At the age of 16 she had reached the potential that the school could offer and an amicable decision was made for her to leave and go to college.

At college she engaged in many different skills and activities not all successful but she did always give her best. At various times she did work experience in Garden Centres, Nursery’s Nursing Homes etc.  She was never offered any employment.

 Eventually she was given the opportunity to develop her cooking skills and enjoyed this very much. At college there was a restaurant run entirely by people with special needs which was a great success.

With the help of the college she was bus trained to get to the college but this was fraught with problems.  Due to her naivety she was also caught up in lots of situations which included, sexual assault, verbal and mental abuse, getting lost etc;

During all this time my husband needed massive support from me, I had to work to support my family and to put our son through university.

After 12 years at the age of 28 The College told me that my daughter had no longer got a place that all her options were used.  Now she had no where to go and spent a year at home.

At this stage in his life my husband had developed bone cancer throughout his whole body and was in a wheelchair.  Our daughter was at home now and slowly but surely became a mini carer for her dad.  She was exposed to situations that many adults without a learning disability could not cope with.

Tirelessly I tried to find somewhere for my daughter to go during the day so that she would not have to watch her father slowly dying.  Eventually she was allowed 2 days a week at Chase Day Service.

In 1999 we had accepted into our family a down- syndrome girl whose family I had know since my teenage years, because her parents had died.  She spends 5 days a week at Chase Day Service.

Re-kindling friendships with people she had known at school and being given a purpose again was the best thing that ever happened to my daughter.  All the stress and stain was lifted and now she shared a common interest with her live in companion.

My husband died in 2009 so at the age of 59 I became a widow.  My daughter is still attending Chase Day Service, she is happy and contented there. If the closure goes ahead I have two people who need some sort of placement.  I am now 64 and far from looking forward to any sort of retirement I am tormented and feel harassed by the situation I now find myself in.   I have two very happy ladies whose lives are going to be disrupted beyond their understanding and for what.

It rolls of the tongue of all the knowledgeable leaders on the council like honey “we know what is best for them”.  The reality is you don’t know them at all.  You won’t listen to the people who are closest to them or acknowledge that they have anything intelligent to say.  We are not handicapped families; we are families with a handicapped member.  Who knows your child best?

Closing the day centre is taking us back 50 years.  People with disabilities will become isolated and lonely.  Have you spoken to any disabled people who live alone since Christmas?  I have, and they are not happy tales. A young disabled woman told me that she had not seen anyone for 2 whole weeks over the Christmas period she just sat and watched T.V.  I have been involved in charities since my daughter was born and still have a position in three.  Companionship is one of life’s greatest pleasures; it’s what keeps most of us sane.

By giving up responsibilities for Day Centre’s the council and its members are dispersing a whole community of vulnerable people.  How you can continue to justify your actions is beyond belief.  How you can continue to contradict yourselves with the statements you make, they are all about making yourselves feel better about the actions you are agreeing to, it is not about helping or understanding the vulnerable people you are supposed to be supporting.  I hope that your retirement plans are met and that you can sleep easy at night.  The only independent futures you are creating are your own. No wonder the whistle blower in the NHS got an MBE it’s a pity that there is no-one within the Day Centre who has the courage to do the same.

I, like many families have had to fight the system to survive and like them I shall continue.  Service users from the day centre are exchanging a day in the centre for an activity lasting about 2 hours or so, is this a fair exchange?  For most of us carers the day centre is the only respite we have.

When I was caring for my husband for the five years while he was dying and also looking after the two disabled girls and running a home, I had a carer’s assessment.  The outcome for the assessment was “Carer not in need”.

At the consultation meetings we were spoken to like idiots and now you are expecting us to congregate again and listen to the lies and short term unsustainable plans that you have up your sleeve without being able to ask questions or get any satisfactory answers from you.

Margaret Bullock

 

Stuart

When Stuart was approaching school leaving age we visited the day services and didn’t particularly like what was on offer, however Stuart had a number of half day and day visits prior to leaving school and clearly enjoyed it. Although uncertain we decided to follow Stuart’s enthusiasm for day services and it proved to be the correct decision, Stuart has had a fulfilling life at Chase Day Services Cannock for over 25 years.

He’s in an environment that offers the opportunity for social interaction with his peers and has formed lifelong friendships. It’s a reliable service that offers stability in his life and our family, so that work and a career have been possible for us and we have not needed other expensive support.

It’s a local service that has professionally trained and experienced staff, who form real relationships and understanding of our son and us as family, the staffs’ knowledge and expertise has been absolutely invaluable in guiding us to other services.

The existing in house day centres don’t segregate and limit the life experiences of our son, contrary to what is being portrayed by county. They receive support and care and have a sense of belonging, they’re with friends and as parents we have peace of mind and some respite.

Our son has both severe learning difficulties, coupled with complex medical needs that can only be met by the professionally trained and experienced staff at the current day service.

As an authority you should be proud of the existing service, not trying to close it. Even in the appalling situation you have put front line staff in they continue to provide an excellent service.

The range of choices at day services has been constructively reduced by county; previously it offered a fantastic range of opportunities and could do again, far beyond what private providers can possibly offer.

In any other walk of life excellence is held as something to aspire to, yet day services have been deliberately taken in the opposite direction. WHY?

Officers have deliberately degraded in house day services, and then used this as argument to say people don’t want it, a disgraceful and reprehensible ploy they should be ashamed of.

In the Cannock area there are very limited choices on offer as was evident at the fair organised recently, certainly none that came close to meeting our son’s needs and ensuring his safety.

Even if a service was available to meet my son’s needs, the prices for these services are unaffordable to us and to the vast majority of families.

It is clear in conversations with staff from private providers they are paid the minimum wage, are inexperienced, have little or no training and don’t have the guidance of experienced staff. This is a matter of great concern to us and should be to county. By definition a private provider will be concerned with their business profit and are unlikely to invest in adequate training and would gain nothing from extending their interest to the whole picture to fulfil persons’ needs.

A life of isolation with few real friends is inevitable consequence for our son in such a system, these ‘community-based activities’ and private providers is in effect isolation and an abdication of responsibility by the council for its most vulnerable citizens.

By the nature of our son’s disability the disruption to his routines, not spending time at the day centre, only mixing in small groups will leave our son isolated and confused, he will talk continually from morning till night about the changes he can’t understand, but is trying to rationalise in simplistic terms. We will have to deal with the behavioural issues caused by these changes and believe me they are not welcome. We have had to convince him everything is OK to postpone the nightmare this closure will bring.

The really worrying phrase is medium term, what is this? As parents the county have put us through a very prolonged period of real stress worrying about the threat to day services and the profound effect it will have on our son’s future.

We know finances are under pressure, listen to us, retain an excellent day service strip out the superfluous management of Independent Futures, their agenda is to keep their jobs, invest money in the front line, radically change how services are delivered, decentralise, make in day house day services the cornerstone for all people with learning disabilities in an area.

Please stop and think before making this life changing decision.

Dave, Marlene and Stuart Bailey

 

Matthew

I am writing on behalf of my son Matthew, my husband and myself regarding your decision to close the Chase Day Services.  I am writing on behalf of us all as it greatly affects each of us and our quality of life.

Matthew has attended Chase Day for 18 years and many of the service users there have been his friends from the age of 5 when they attended Beecroft School.  His social circle is at the Day Centre and he feels safe and happy there.  He has had the same Key Worker for 16 years and if there is a problem concerning Matthew we work together and get it sorted.  He trusts his Key Worker, as we do, and know that she is well trained and highly qualified. Matthew has Downs Syndrome and Type 1 diabetes, he cannot read or write and sometimes has to use Makaton to make himself understood.  Will the “other agencies” that you are suggesting replace the Day Service have qualifications in Makaton and medical training to cope with his diabetes when required?

Matthew has a varied timetable at the Centre ranging from drama to cookery and he is able to change this if he wants to try something else.  Unfortunately, over the last few years (in preparation for closure?) some options have been withdrawn, such as pottery, gardening and woodwork to name a few. The general feeling amongst carers is that this closure was been decided a while ago and the consultation was just to enable a box to be ticked, a bit like “justice has to be seen to be done” but that doesn’t mean it is done.

You cannot understand how devastated Matthew will be with the closure as it is such an important part of his life. He loves going there and enjoys every aspect of it.  For example we have just attended a performance of “Into the Woods”, a pantomime in which every member of his drama group was involved, even those with multiple disabilities (the ones you wish to segregate).  They all loved it, as we did, and we are looking forward to seeing them perform “Les Miserable” which is in rehearsal at the moment.  Perhaps you would like to attend the performance and see how much enjoyment we all get from it, performers and audience.

I realise that I am just a voice in the wilderness and although we had a consultation and not a referendum I still believe that in a democracy the majority rules and with 80% of people voting for the Day Service to stay open why are you not listening. We live in the real world and know you have to make cuts but to penalise the most vulnerable in our society does not seem appropriate or fair.

When Matthew first left school I was told he could not be guaranteed a place at the Day Service (Eric Robert Centre as was) so I asked what else was on offer and was told “he likes watching videos doesn’t he” and I feel this is what we are going back to.  A shame after all the advancements that have been made over the years that Matthew may well become isolated and please don’t mention Care in the Community as I can assure you the community do not care any more than you do.

I request a reply to this letter just to assure me (cynic that I am) it has not ended up in the waste paper basket.

 

Louise

Louise our daughter who has lived at Brunswick House, Cannock for 50 years has attended “The Chase Day Centre” regularly. The Centre has not only provided her with an outing to meet friends but it is an important mental stimulation and satisfaction from achievements which would not have been possible if she hadn’t attended! Going on a regular basis and doing activities has helped her tremendously.

Louise will be re-housed to “Woodside Place” in August this year. This will be a dramatic change to her life as she won’t understand what is happening to her as she is unable to comprehend and therefore she gets very agitated! We don’t even know if any of her carers will be working there as there will be a significant wage drop and therefore they might not be able to transfer for financial reasons. This situation is causing us great concern as we are very worried that this might seriously affect Louise’s health. (Please also see a doctor’s letter which is attached) When even the smallest of changes take place in Louise’s life this has triggered seizures and hospitalisation in the past.

We can’t explain or plead to you enough how important “The Chase Day Centre” is, even more so now that Louise is being re-housed! There are too many changes happening at the moment and she won’t be able to cope! She needs as much similarity as possible with friendly faces that she knows and professionally trained staff to be able to attend to the needs of these complex adults. Without centres like these attendants and their families will be devastated! This is a service in the community that needs to be continued as it will make a profound difference to their health and happiness.

We have been very lucky up till now and very grateful to “Brunswick House” and “The Chase Day Centre” for all the care and attention that they have showed Louise Hill but please think of those families in the community that don’t get any respite and need the help from the day centres. Cuts in the financial structure have to be made but there are areas that are insurmountable and these can affect human life!

This is their life! Please think again! These adults who attend have been handed a raw deal out of life and they ask for very little – other than love and respect please don’t take The Chase Day Centre away!   

Sue & Geoff Hill MBE

 

Andrew

I am a full time carer for a young man with learning disabilities who uses Chase Day Services. He is 34 years old.He is distraught at your decision to close this facility that he enjoys so much. He attends 4 days per week and accesses Cannock Chase, leisure centre and drama group via the centre with his friends and staff who he knows, feels safe and enjoys being with. He is a vulnerable adult, he will be unable to access these activities on his own. What right have you to take them away from him. What was the point of your consultation, from the outset you had no intention of abiding by the wishes of the service users, parents and carers which was for the most sensible option one. You should be ashamed.

Do you have any idea what you are doing, the distress and anguish you have caused to service users their parents and carers; do you care. Have you ever come to one of our clubs to see how they enjoy being together. Have you asked any of them personally what they want, NO, they are just a number to you but to us they are human beings, vulnerable human beings who need our help and support and I can assure you we will fight you all the way. You had a golden opportunity to do something good with Day Services and improve the lives of these people, how do you sleep at night.

Trudi Watts (carer).

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