52 mins
Faith into action
FOR a place that you might expect to be mostly about death, Rachel House is remarkably full of life.
The House is one of only two specialist children’s hospices in Scotland – the other is Robin House, in Balloch, at the southern tip of Loch Lomond – both run by CHAS (formerly Children’s Hospice Association Scotland, now operating as Children’s Hospices Across Scotland).
Tucked away behind the centre of Kinross, one end of the discreet two-storey complex rings with noise: happy chattering children, singing along to the music therapy, playing with the toys scattered around the common area. It could almost be a regular nursery.
In the next room, there are pool tables, musical instruments and computers for teenagers. Advances in medical science mean people who in the past would not have survived through childhood are increasingly living into their teens and beyond; and the hospice is adapting accordingly.
Nearby there is a jacuzzi and a sensory room, outside there’s a large garden with play equipment. In the bedrooms, the emphasis is on homeliness and familiarity, with the children’s own bedding, toys and pictures. It’s as far removed from a typical clinical environment as it can be: medical and mobility equipment is as unobtrusive as possible, and the staff don’t wear uniforms.
Jane McFarlane, the clinical nurse manager, says the guiding principal of the hospice is ‘we can’t add years to their life, but we can add life to their years’.
But then the reality hits home when she shows me to the room where children who have died can be laid in bed so their family can spend time with them until the funeral, if they want; and says that the hundreds of pictures of happy, smiling children on the walls are of those who formerly used Rachel House and have now died.
There’s joy here, but underlying it all is the fact that all of the parents visiting are living with the unthinkable reality that their child is going to die young.
Rachel House accommodates up to eight children with life-shortening conditions for a few days at a time. Parents can either leave their children there or sleep in the rooms for families upstairs (siblings and other family members are welcome, too); either way, it’s a break from the relentless pressure of looking after a child with medical needs.
“Just to be able to come here, relax and sleep and to know someone else is taking the strain and burden is a huge thing”, states one parent’s testimonial; another says: “For us, the highlight is being able to come and go as we please… at home, there is never more than one hour when we (don’t) need to do something.”
Another, with devastating understatement, says that having family support is great, but ‘it’s a lot to put on the family if she stops breathing, it can get quite serious sometimes’.
“It’s the understatement that makes it so real for me”, says Professor Gordon Dickson, who has just stepped down as chairman of the charity. “If CHAS wasn’t able to help, either through the hospices or at home, then that lady who never has more than an hour in which she doesn’t have to do something would just be doing that for 24 hours every day.”
Gordon served as the chair for 12 years, which he says passed ‘in an instant’. Prior to that he was an academic for about 25 years (“That’s where the ‘Professor’ comes from”) specialising in risk management, as well as a company director and briefly vicechair of Greater Glasgow Health Board.
Then in 2004 he became chief executive of the Medical and Dental Defence Union of Scotland (MDDUS), advising doctors and dentists on managing risk, and indemnifying them if they were sued.
“The advert for the MDDUS job looked like it had been written for me”, he says, “And it was an extraordinarily exciting and enjoyable 12 years at the end of my fulltime working life.
“And the reason that background is important is that I had known a person who was involved with both the Health Board and MDDUS who was also involved with CHAS, and he said to me in 2005 ‘would you consider joining the CHAS board?’ and I said ‘yes’, and very soon after I was asked to be the chair.
“I think it was somewhere in my head that there was a body that looked after children who were dying, and that was probably all I knew. But when you join the board of a big charity like CHAS, you realise all the things you didn’t know.
“It does consume a very great deal of your time when you’re on the board of a charity like this, I don’t think many people realise just how time-consuming it is. CHAS has 2 5 0 members of staff and over 8 0 0 volunteers, and last year cost £ 1 3 million to run and had 1 5 2 new admissions. It’s a big enterprise.”
Professor Gordon Dickson
“There’s joy here, but underlying it all is the fact that all of the parents visiting are living with the unthinkable reality that their child is going to die young.”
But there was another motivation behind Gordon’s decision to serve. Having grown up in the Church of Scotland, he has been an elder in the Church most of his life, now at Greenbank Church in Clarkston, to the south of Glasgow. He says he felt helping CHAS was a way of expressing his faith.
“I grew up in the west of Scotland, and I was always involved in things like the Boys’ Brigade, and personal belief came in my mid-teens.
“I became an elder at King’s Park Church (in Glasgow) at 2 1, and later at Greenbank I was leader of the Bible class and Sunday School Superintendent. It is a very important part of my life, and so being involved with CHAS at this level I saw as a real act of service. It wasn’t just words, it was actually doing something: faith in action if you like.”
He points out that the CHAS connection with the Church goes a lot deeper than just him.
“Over the last 2 4 years people associated with the Church of Scotland have, one way or another, donated over £ 1.4 3 m to CHAS. That comes from a variety of sources: the Guild, the Sunday Schools, clubs, the retiral offering at my own church in Greenbank at Christmas goes to CHAS, we have a colour circle (art group) that sells paintings every year and that goes to CHAS. And that will be replicated all over Scotland.
“I suppose for me it just emphasises the huge generosity that there is, and the caring that there is. Caring isn’t a monopoly of the Church of Scotland, but certainly you can see in that generosity the fact that people do care.
“Your faith in human nature is certainly restored by a constant stream of kindness and generosity, like the elderly gentlemen who turned up at head office one day with two cheques for £100,000 each!”
The Church link was reinforced in 2015 by the visit of the Lord High Commissioner to the General Assembly, Lord Hope of Craighead. “It was a great afternoon”, says Gordon. “He went round and met a lady who had to turn her child every four hours. He asked what did she feel about coming and she just said ‘I can sleep the whole night’.
“The Purse Bearer, Tom Murray, was also there in his regal garb including the Queen’s purse. One of the wee boys asked him ‘what’s in your bag, mister?’ and Tom put his hand in the purse and pulled out a chocolate coin covered in gold foil.” Gordon’s 12 years as chairman have included a lot of serious developments for CHAS, too.
“A big thing that we did with the Scottish Government was commission a study to establish the number of children in Scotland with a life-shortening condition. That was a very important thing to do.
“The study – we called it the ChiSP (Children in Scotland who require Palliative Care) is the first time we have carried out any kind of scientific work to establish the need for our services. And we found in fact that there are 15,400 babies, children and young people under 25 in Scotland who are living with a life-shortening diagnosis – a staggeringly high number. And in the year in which the study was carried out, 195 of them died.
“Now in that same year we had one third of them die in the care of CHAS. And so there are two babies, children, young people out there each week dying from a life-shortening condition that we in CHAS are not reaching.
“And so our new strategic plan is to reach every family in Scotland, and to that end we have a new funding plan. The Scottish Government is helping greatly by giving us parity of funding with adult hospices, which means that heading towards 50% of our costs will be met by the government from currently round about 16%.
Professor Gordon Dickson
“If you turn that around to my Christian beliefs, you have to turn your faith into action, and the small part I have played is my way of giving life to my faith.”
“These are big achievements – the ChiSP scheme and government funding – these are really quite big things.”
In the meantime, other aspects of the work have been developed. “I think other things that have been important are the work with young adults, and the need to make sure that young adults have appropriate provision for their care.
“So we’ve been working very actively with a range of other agencies, to try to ensure that when young people get into their 20s there is a pathway for them to have more age appropriate care than it’s possible to provide in a children’s hospice. “Another big issue during my time has been the growth of the at home service.
CHAS at Home, at one end of the spectrum it’s giving people that respite, just that ability to relax and to go out. And at the other end of the spectrum, we help with those who choose that the end of the life of the child will be in their own home.
That’s been a huge growth last year: there were 1029 home visits all over Scotland by our highly-trained, dedicated staff.” With the CHAS reins handed over to George Reid last September, Gordon will have more time to spend with his wife Moira, their two daughters and three grandsons. I ask what will stay with him from his time with the charity.
“The overwhelming feeling is ‘how on earth do you cope if you are told your child is going to die? How do you cope?’ And if CHAS wasn’t there to help it would be a bleak, bleak outlook – and that’s the reality for the two thirds of children we don’t reach.
“If you turn that around to my Christian beliefs, you have to turn your faith into action, and the small part I have played is my way of giving life to my faith.”
CHAS last year launched the Keep the joy alive campaign, with the aim of doubling the charity’s income so it can reach every child and family in Scotland who could use its help. Find out more and donate at www.chas.org.uk
This article appears in the February 2018 Issue of Life and Work
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