Sid and Helen Grimes blog for SDN on the need for alternative daycare provision in Shropshire

In 1980, when our 18 year-old son, Tony, was on a 48-hour pass from the RAF, he was involved in a serious road traffic accident in Brandon, Suffolk, in which our 22 year-old son was killed. Tony was very badly injured, including serious head injuries – in fact they did not expect him to survive – and since then has been restricted to a wheelchair and needed 24-hour care. He has also suffered from epilepsy since the accident.

After caring for Tony for 18 years, our then GP suggested we should put Tony in a home for respite, and Social Services put him into a home in Colchester where he eventually stayed for a year, and then for another year in a home in Liverpool – Tony was not at all happy in either home, and we had serious reservations about the treatment he was receiving. After Tony spent 3 months in hospital after breaking his hip, we had Tony home. Altogether, we cared for our son for 27 years.

In 2000 we moved from East Anglia to Shropshire, first to Treflach and then to Oswestry itself, partly to be nearer our daughter, who lives near Wrexham. The difference in help we received from social workers in Shropshire could not have been better – we cannot speak too highly of our social workers here. Nearly 4 years ago Social Services found Tony a bungalow being built by Sanctuary Housing in Oswestry, and Tony is really happy there. We had to pay nearly £6000 to furnish and carpet the bungalow before he moved in and we are now trying to raise funds to have a doorway moved to make it more wheelchair friendly (architects ought to have to spend a week in wheelchairs etc. themselves before they are allowed to design property for the disabled!)

Tony is on the Direct Payment scheme, which we administer on his behalf. We employ the carers directly, to cover Tony’s care for the whole week, with the help of Sally’s Payroll (Sally’s Payroll Service Limited, 11 Meole Walk, Meole Village, Shrewsbury, Shropshire, SY3 9EU) for which Social Services pay £47 a month to sort out our employer’s responsibilities like National Insurance and Income Tax, and we find that the system works really well. The Penderels Trust (Shropshire Office: Penderels Trust, Unit 1 Pimley Barns, Pimley Manor, Sundorne Road, Shrewsbury, SY4 4SD, Tel: 01743 350174, Email: shropshire@penderelstrust.org.uk) help us interview new carers, and Social Services pay Employers’ Liability Insurance for us (although we pay an extra £60 a year to cover us for legal assistance if needed). Every three months our accounts are checked by Social Services – they have always been in excellent order – and the Independent Living Fund also check the accounts every 2 years. Helen pays the cheques needed, and keeps meticulous records of everything. A bonus for council tax payers is that the Direct Payment scheme costs Social Services less than using an agency for carers.

We have been really lucky with the carers, and they could not be better; they keep the bungalow spotless, Tony is always clean and smart, they cook his meals and they take him out, generally every day, for which we pay the expenses. We also pay for a private physio once a week to help him. Tony only really has the use of his right arm, but before the accident was a very active person, interested in all sorts of things, including motor bikes and mechanics. Now he loves the company of other people and talking, and needs the stimulation of interacting with other people, but his condition means that he has no inhibitions and poor concentration, which can make social activities difficult!

Several years ago, our social worker found Tony a place at the Grange Day Care Centre for two days a week. Tony’s carer goes with him, and, using his bus pass to pay half the cost of the wheel-chair suitable taxi, we pay £65 a week in transport. Tony has tried other day care centres, but not got on well, mostly because his lack of inhibition means that he does not always behave appropriately and, for instance, will call out the answers straight away in a quiz regardless of whether it’s his turn or not. They are not always wheel-chair friendly either. However, The Grange seems to cope well with Tony and he loves going there, so we were distraught when it was announced that it was going to close.

Being fighters, we looked everywhere to find an alternative, preferably in Oswestry, which seems to have very few day care centres (they all seem to be based in Shrewsbury). Our daughter even spent some time looking on the internet, but without success and we have contacted David Cameron and Shire Hall, also without success. Someone suggested that we visit the new church in Cabin Lane, Oswestry, which also has a community centre, and the staff there were very helpful. They have a lovely room upstairs, with wheel-chair accessible lift, disabled WCs on both floors, a café and they are making a garden suitable for wheelchairs. They also have a large wall TV suitable for showing films, and their hire charges are very reasonable. We estimate that, with two paid carers, volunteers and users bringing their own carers where they need to, we could run a day centre there for two days a week – possibly Mondays & Fridays – for less than half the cost that other day centres charge. We would need to have 6 – 10 users for each session, and sessions would run from 9.30 am to 3 pm, with a sandwich lunch. We would have to approach funding charities for help with the equipment needed. Qube in Oswestry have also been encouraging, and we will go back to their Volunteer Centre for volunteers when we can get the project under way.

So what now?

• We want to hear from other disabled people, or their carers, who would enjoy this sort of day centre facility
• We want to produce a flyer for distribution to GPs surgeries etc. in the Oswestry area to get more people involved, both potential users and helpers, and need help with both the design and printing of this
• We are both quite elderly and need the help of more active volunteers in getting this project off the ground

So if you can help with any of the above, please get in touch with the SDN Newsletter editor, Peter Staples, email newsletter@shropshire-disability.net, and they will pass on your details to us.

We look forward to hearing from you.

Sid and Helen Grimes

The Grange Day Centre in Shrewsbury provides support and services to disabled people and is seen as a home from home by many users and their carers, who are offered some relief from their 24 hour care responsibilities when their wards are at the Grange.

Sadly it has been in the news in recent weeks because of the very real threat of closure of the Centre as part of Shropshire Council’s budget cuts. Members of Shropshire Disability Network had very real concerns about the haste and apparent lack of transparency in arriving at the decision to inform Grange users and staff about the decision to close the centre.

It was therefore decided that the SDN Steering Group would invite users, family carers and others from various professional bodies associated with the Grange, to get a better understanding of the needs of people who would shortly lose day centre facilities at the Grange, and to listen to the concerns of family carers.

One of the members of the SDN Steering Group, who is also involved as a pioneer for Personal Budgets, attended the meeting and shares her perception of what was discussed:

It was a very positive meeting, as Geoff – our Chairperson – stated “if we have greater understanding of the needs of people, then we hope to be in a better position to be able to help/support them”.

SDN’s understanding until the meeting on 6th January was that the Grange Centre would close by April 2011. We were informed that Shropshire Council have now received two reports – one from family carers and another from those using the Grange Day Centre facilities, and there may be a reprieve until December 2011 – but nothing is definite yet, as further meeting is being held shortly.

Everyone at the meeting had the opportunity to speak and despite the worries of people directly affected by the pending closure there were a lot of constructive comments. We heard that:

• there is a great fear that friendships made over many years may be lost as people might be split up
• some day centre users go to the gym at Stoke Heath Young Offenders Institute. Some Young Offenders come to the Grange to help with gardening. Relationships and understanding of the needs of the more vulnerable is enabled. This is another area which could be lost, which affects those in the wider community.
• several activities take place at the centre including games, computing, going out shopping etc, with carers. Meeting others is so important to these people and for family carers it can be their lifeline  –  knowing the cared for are being looked after, fed, kept safe, while they have a much-needed break. Some people need their own carer at the Grange when they attend, others don’t – it is all individually assessed.
• there were real concerns from carers regarding “long term advocacy” for the cared for, when the family carers are no longer around. You could sense people who have anything to do with the Grange see it as “home” and, like a larger family getting together to do things, enjoy the companionship of others and a place they want to be, but also a place where the individual needs are understood and advocated for.
• there is a “big fear” factor that always comes into play when major decisions are being made in peoples lives and they feel they have no control over the outcome
• not every user/carer has their Personal Budget sorted, so can’t make plans for the future. However, we heard this has taken longer than anticipated but we are assured that by 31st January 2011 everyone will know how much money they will get; this enables the next stages of support planning etc to take place.

My own view is that I feel as a pioneer for Personal Budgets, despite what has been aired in the local press, the pending closure of the Grange Centre has nothing to do with Personal Budgets. It is cuts that are causing this closure, not the move to Personal Budgets. Personal budgets were introduced in some counties 2 years ago and it is just unfortunate Government/Council Cuts have happened just after the introduction of Personal Budgets in Shropshire and led to this muddying of messages.

Users come from Shrewsbury, Market Drayton, Oswestry and the wider surrounding areas. We heard from a family that have already been looking for alternatives to the Grange for their son. They had visited various places but had been referred elsewhere. When going to the ‘referred’ place, they discovered that it was not appropriate or did not provide the service and they ended up going around in circles. Geoff, as Chairperson, pointed out “if this is happening Shropshire Disability Network needs to know”. Vulnerable people and those who care for them have enough to do just getting through each day without this added burden.

It was a good meeting with comments being passed by those attending:

“We have found out answers to things today we have not had before”

“I think this has been good that we have come together like this, I have learnt a lot”

Prior to closing the meeting, Geoff asked each individual person if they had anything else to say that had not been said. Much information was exchanged at this meeting and all were invited to become members of SDN and join us at our quarterly general meetings.

 After the meeting The SDN steering group held a meeting to discuss what we had heard and to debate what we can do to support people – which will be made public at the appropriate time.

Thanks to SDN Steering Group member Ruby Hartshorn for providing this account of the meeting.

As a result of the meeting, SDN Chair Geoff Forgie agreed to write to Steven Chandler – Assistant Director of Social  Care at Shropshire Council – to support the proposed deferral of the closure of the Grange until procedures are in place to support the resulting needs of all current users.

More time and care needs to be taken in establishing alternative sources of support and help for all these vulnerable people and it is not acceptable to ‘signpost’ them to other help without first confirming that there is help available from those sources, and capacity within those organisations to provide support to the standard required by the individuals concerned.

If you use the Grange, are a carer, or someone who has an interest in the provision of services offered by the Grange, please share your views with us. Just click on the comment box, below. We look forward to hearing from you.