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Leuchie House - Carers UK Forum

Leuchie House

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We paid a visit here on Tuesday. Thought I'd post Rob's report on it. Hubby and I felt it was extortionately expensive for what they offered.

"Myself and my parents travelled through to North Berwick to visit the only possibly suitable candidate for adult respite in Scotland that I have been able to find, called Leuchie House.

If anyone knows of any other suitable places for younger adults with severe physical disabilities to go to for respite breaks please let me know about it! I say the word 'suitable' because I know that there are many adult respite facilities around, but nearly all of these cater for people specifically with learning disabilities, or elderly people with various forms of cancer, dementia etc - what we require is somewhere specifically catered towards younger adults with severe physical disabilities, where we can go for respite breaks.

On first look Leuchie House appears to tick all these boxes. Originally set up for those with Multiple Sclerosis by the MS Society, they are now an independent charity and are wanting to branch out to support people with other severe physical disabilities.

The main person I have been speaking to there says that they would be happy to accept people with DMD as they have people already there with MS who have very high care needs and some who use ventilators, so they should be able to adapt to dealing with those who have DMD. They have a number of very experienced nursing staff and there is always a nurse around at all times.

Most people who go at the moment are in their 50's and 60's but they are young at heart and there is one person who goes who is in his 20's and would like to meet others closer to his age. The good thing is that they do want to bring the average age down a bit and with all of us younger adults needing to find alternative adult respite now that CHAS is no longer an option, many of us could visit Leuchie House together which means we would always be with people our own age which is what all of us want. They have room for 23 "guests" as they call us, to stay at any one time compared to the 8 that Rachel House and Robin House are able to accomodate.

Like CHAS, Leuchie House also takes people on various outings as there are a lot of tourist attractions close by, and some people enjoy going to other places such as the pub to watch football. Thinking of interests that people of our age group have, I asked about taking people to places like nightclubs and the lady advised me that she wasn't sure if they had ever done that before but they were always happy to try new places if people asked to go. I am sure we would certainly expand their horizons if we all went!

So having had the tour of the building I will give my opinion on the facilities. It is a very old building, being an 18th century mansion house which has been adapted to accomodate people with high dependency physical conditions. So it certainly has a different feel to it from Rachel House, with massive rooms and high ceilings. Some of the bedrooms are for two people, they are not all single rooms like Rachel House, but they have curtains that go right around each bed so you still have privacy, so that doesn't really bother me. They don't have ceiling hoists because the ceilings are much too high but they have many portable electric hoists instead.

They have a large "quiet room" to relax and chat, a TV room and an Activities room with 2 desktop PC's, a TV with a DVD player and a Nintendo Wii. If those of us with DMD were going though some of us would really want more game consoles because many of us enjoy gaming with our friends and most of us don't have the upper body strength to be able to play the Wii. So one downside is that there is much less technology than CHAS hospices have to offer.

They also have large, accessible toilets, a designated physio dept with a number of physios available, and a room where you can go for aromatherapy, reflexology etc if you so wish. This is not my cup of tea but I know some people enjoy it!

Outside, Leuchie House is situated in the countryside, with beautiful gardens surrounding the building and accessible woodland trails which can be explored, so I had a wander around since it was a nice day.

However onto the main downside - the cost. The cost varies depending on how much care you require, and most of us adults living with DMD need a lot of care - especially those of us who use ventilators. This would place us in the "highest dependency" category, which means we would each need to pay - prepare to be shocked - 1000 pounds just for a 4 night respite stay (the minimum amount of days you can go for) and 2495 pounds for 11 nights (the maximum stay)!!

I am sure that you will agree with me that this is incredibly expensive, far too much for most of us to be able to afford, I mean you could go abroad for less! I know we have been spoiled for years because CHAS don't charge us anything for a respite stay, but even though all adult respite places charge you, none of them that I have heard of charge anywhere near as much as Leuchie House.

So it looks as if it would be a good place if a group of us young adults went for a stay at the same time, but the price is the big off-putting factor. I hope that something could be done to bring the charge down significantly but I don't know what. I would like to know what other severely physically disabled people think about Leuchie House from my description. Is it a place you would be interested in going to for a respite stay if it were more affordable?"

We are all (parents and the young people who are to be expelled) going to be visited by the Children's Hospice "At Home" teams who will take notes on what services we feel we need in order to help us with our campaign to have a young adult hospice built but they really feel it is up to us parent to do the fighting for this. It really p's me off because if it weren't for us as parents already fighting, the Children's Hospices wouldn't even exist and now they are wanting us to start all over again. Its 20 years on, some parents have their own health conditions now after years of caring, some are even dead - now they want us to start from scratch again! Some of us are done (some of us are on the ropes but won't give up lol). Good news of a sort is that they cannot find staff to be part of the Transition Team and the cut off date won't be getting introduced until this team is in place so we will have 3 and a half years to identify other services rather than the 3.

Also we got a letter back from the MD Campaign - they are not listening to the young men tell them what they want here in Scotland but are wanting to force on us what they have in England which is a sort of 4 hours a day thing around getting jobs/training etc rather than the respite which is wanted.

Apologies for this extremely long post but I wanted to let everybody know how things are going.

All the best

just a thought Eun - could you claim direct payments for the cost of your sons respite visits.

yes its an awful lot of money, but i would have thought that in your family's situation its an absolute necessity for you all.

my daughter gets over £2000 per month direct payments for her 24/7 care, so if you weigh this up with the cost of Rob's respite needs, a few times per year or how ever often he needs it, the cost does not seem so great.

worth investigation i would think. good luck and please give it some thought.

one carer paid at £10 per hr x 24 hours x 4 days = £960 .... that doesn't include times when 2 care workers are required e.g. for manual handling; nor food, use of utilities, upkeep of the building, additional staff - nurse, housekeeping etc

This is the true cost of care - and why we are so valuable as carers. If only this was appreciated by ss, they might realise that paying out for respite care is saving them millions in the longterm.

I grant you that £1000 for 4 nights stay does sound like a lot of money, but if you break it down it works out at a little under £10.50 per hour for 24/7 experienced care - a lot less than you'd probably have to pay for someone qualified to stay with Rob at home - and, although a Charity, Leuchie House as a business still has to make a profit to continue to exist.

You say that there are a number of Rob's friends who would probably all like to have a respite stay at the same time, so would there be any chance of a reduced 'group rate' ?
As others have said, when you break it down, the costs are not unreasonable. My son has very high care needs for different reasons and respite costs have been higher than those you have stated.

HOWEVER, he/we personally have not had to pay these costs. Either Social Services have paid, in which case he was financially assessed and only paid a contribution of what he could afford (according to their formula), which was around £75 per week. Or, when he was assessed as qualifying for Continuing Health Care, then health paid all the costs and he did not have to contribute anything. Obviously, his assessments had to state that respite care was necessary. Telling them (honestly) that my OH was having to take unpaid leave to help care seemed to help our case (me being the 24/7 carer). As did bursting in to tears while on the phone - I was pretty desperate by then.

We did need to fight for what we felt was appropriate respite care, but when funded by Social Services, having a supportive Social Worker helped a good deal.

PS we are in England.
Hi Eun,
This place sounds pretty good, not as good as CHAS maybe, but more than OK. I think that finding somewhere is the first step and now you need to find the funding for it. Can you access any charities monies, or anything like that? I think scally would be a good person to advise you about that as he seems to find all sorts of deals on the internet (not quite sure how he does it Image )
Im sure all the fighting and hard work must get you down - the trouble is that you and parents like you are true pioneers - no one has ever been down that road. In fact before you there wasnt even a road to go down. See if you can find a way to take this opportunity.
Thanks for the advice all. We are still at the early stages of this - I think our social worker is on our side but the issue is trying to get all the other social work depts for all the other boys to pay as well so that they can all go for respite at the same time.

My concern is that they are not a hospice so what happens if Rob starts having palpitations or a rapid deterioration in his condition? There is no doctor on the premises like there is with Rachel House. What about the support for us in the form of bereavement support and counselling? Its very scary to think about all this.