Dr Clare Hale, Building for the Future
In a series of up-close-and-personal interviews we get to look behind the scenes of Rainbows Children’s Hospice. As we interview employees and volunteers, we learn more about their work, what makes them tick and why the Building for the Future project is vital to help them further their work with the life limited children and young people of the East Midlands.
In our second interview we speak with Dr Clare Hale, Deputy Medical Director of Rainbows Children’s Hospice.
Clare walks in, looks at me quizzically, shakes my hand and asks me where she knows me from. She enquires as to whether I have been into the Walk in Centre in Loughborough recently? I say no and ask what her connection to the Centre is. “Oh I work there,” she says. On top of being a GP and working at Rainbows, I ask. Clare laughs, sits down and says, “It makes me sound busier than I actually am. I do two thirds GP work, quite a lot of Walk in Centre shifts and I work here at Rainbows. It keeps me busy, it’s varied and I enjoy it.”
I ask Clare how she got involved with Rainbows. “Well I was always interested in palliative care on the General Practice side but that was more in relation to adults at that point. I knew Sat (Dr Sat, Medical Director of Rainbows and a fellow local GP) very well anyway from way before. In the late ’90s he was keen to expand the medical team here at Rainbows, because up to that point, he was doing all the medical cover himself with back-up from people in his practice. Essentially, however, he was doing 24 hour cover, 365 days a year, apart from when he was on holiday or away for the weekend.
Sat had heard that I was interested in palliative care and asked me if I was interested. I started in November 1998.”
I wonder if Clare had any reservations before joining the team. “I think a lot of the concerns I had were based around the actual medical side of it – whether I would have enough medical expertise to be actually able to do the job. I was, I admit, also concerned about the emotional side too – whether I would be able to cope with that.
Bottom line is unless you’ve done it you’ll never know. You might think you’re ready for something but come unstuck part way down. I think the medical side of it you just develop over time and the way Sat organises the teams and the training; you were never on your own. There is a heck of a lot of talent here. When I first started Sat worked with me and, under his supervision to start with, I started seeing cases. Then it’s a case of progressing up to more independency.
Although you can’t view the children here as little adults, a lot of the ethos of palliative care in the General Practice setting, the care and the looking after of the families and the looking after of the patient as a whole person – that sort of thing – applies whatever the age group. So there are also similarities with what I had being doing previously as well as a few differences.
I guess the biggest thing here is that as a doctor you aren’t going to save lives. The satisfaction of working as a doctor at Rainbows isn’t about getting people better, but if you can make it a better death and a better journey towards that point then you’ve achieved huge things then haven’t you? Sometimes when I’m here the biggest thing I achieve from a visit is a hug with Mum and a play and a cuddle with their child. It’s not about writing up some fancy drug on the drug chart. There’s much more to it than that.”
As Clare has said, in the 1990s Dr Sat decided that it was time that the medical cover at Rainbows should be developed and he set about recruiting the team. Clare Hale was one of three other doctors that Dr Sat recruited, and even today Rainbows still runs with a core of four doctors. “We were working as we do now with a rota which we call one in four.”
Essentially the basic cover is split into quarters with each doctor taking one quarter of the rota. “We each look after one day a week and then we each have a three day weekend – one in four. So, for example, I do the 24 hours of Monday into Tuesday, and then one weekend in four I do Friday morning through to the Tuesday because of course I’ve got the Monday, so it’s like a four day shift. It works really well for us I think mainly because we’re all quite good friends as well as work colleagues. If there ever is a point where there’s another commitment or a special occasion – a birthday or whatever – it’s always been the case where someone steps in to cover and then you pick up the reigns when you return. Internal swaps have never been a problem but I don’t think it would necessarily work in every organisation. Of course I’m just talking about the doctors but it is very much a team here at Rainbows rather than just doctors or nurses. It’s about a team where the medical aspect is just one side of it and certainly not the most important side of it I’m sure.”
I ask Clare what Rainbows means to the parents. Without hesitation Clare replies, “I think from a parent’s perspective having respite care that they can actually trust a very complex child into is perhaps a rarity. A lot of the children are on medication literally throughout the day and throughout the night.
That means, for the parents and the team here when a child is with us, broken sleep. It’s not uncommon for a child to need nebulizers during the night, drugs dosing at 2am, 3am. These are children that you can’t just get a child minder for. Grandparents may or may not be involved but it certainly isn’t the same as just popping out for an evening with two well children tucked up asleep. These children need such an input of care that the respite is invaluable to parents throughout their journey through Rainbows.
There are a lot of children at Rainbows who come here for many, many years before they reach the end of their life. I think without the respite care we offer .. well, I think a lot of parents would,” Clare’s voice trails off. “Well, I don’t know how they would cope to be honest.”
This feeling is perhaps even more easily understood when you consider that some of the families who use Rainbows facilities may have two, possibly three children each with the same life limiting illness. Says Clare, “Yes, some of the genetic conditions that we see are such that parents have more than one child with a life limiting illness. I’m a parent myself and how they cope and manage … I’ve got massive respect for them.
These families really are inspirational to work with. I’m quite sure that whatever work and effort we put in we get back at least as much if not more from working with these families. I think it’s a real privilege to work here actually because these parents and children are letting you into such a private world. A parent is losing their child. When we work with an end of life case we are allowed into the life of that family even if that is just for a few days, or a few weeks. You’re impacting and making decisions about such a monumental time in their life aren’t you?”
I ask what reaction Clare gets when people ask her what she does. “It’s funny really, when it crops up and people ask me what I do and I say, ‘I work at Rainbows’. The number of people who say, ‘Oh gosh I don’t know how you could do that’. That’s quite often said. It makes it sound like such a bad place! That’s an awful concept to have.
Yes the work can be emotionally difficult but you have to look at what you’re doing and the effect it has on both the children and the parents. To me it’s a real privilege. To be trusted by these families to do this job is very special. It’s not just like popping to see your GP with a bad throat and it doesn’t really matter who you see as long as you get better – that’s it. Here it’s such a personal thing.
What we do try and do at Rainbows is if a child comes in on our day on rota or on our weekend on call, we try and follow that child right through. For example, the last little boy I looked after, he came in on a Monday and he passed away two and a half weeks later. I think apart from one day when I really couldn’t come up here, I was in and out perhaps two or three times a day which is quite a commitment, but it’s what every doctor will do here. I just think that if that was my child and I could have just one doctor rather than a succession of doctors, I’d want it for me and my child – so you try and do it for them. It can be hard but you do it. It’s what you’re here for.”
You plan call shifts and you plan life around call shifts, but when you take on responsibilities like this you have got to juggle other things. It can be a bit of a minefield of juggling when you’ve got family yourself and other commitments including, in my case, other work commitments. That said if there is a point where I really can’t get up here there is always the Duty person here in the background, looking after them.
Even then we try and limit it to as small a number of people being involved as possible because I think even with the best will in the world everybody does things slightly differently. Even though we all sing off the same hymn sheet, just the way you phrase things or you emphasise certain things or don’t say other things can give mixed messages and I think if you have that continuity of what was said you get a much better handle on the child.”
Although an awful lot of training and development is undertaken in-house at Rainbows, staff members also undertake specialist training to ensure that their patients are always looked after by the best. Whilst at Rainbows Clare has developed her own skills by taking the Paediatric Palliative Care Diploma at Cardiff University. “I think that helped me a lot especially with areas that I hadn’t felt particularly confident in before and which are so specific to the work I do here.
I remember initially being terrified of tackling the Diploma because I felt that I would be the weak link and the duffer at the bottom of the class. There were all these Specialist Registrars from Great Ormond Street and Paediatricians from here and there and Paediatric Oncologists from other posh hospitals … and me. I felt that I was the little worm under the stone. Once I got started, however, I was quite pleasantly surprised at how much I knew and was able to more than hold my own. I spent two years feeling the underdog and came out on top and that’s in no small part because of the training and support that I’ve received here at Rainbows.”
Clare has now worked at Rainbows for nearly 11 years and is one of the longest serving children’s hospice doctors nationally. “I think there are many who give it up for personal reasons or emotional reasons or whatever the reason, before the 10 or 11 year mark. Obviously there have been a lot of changes in the world of children’s hospices over the years. New additional hospices have opened up all over the country and here at Rainbows as our skills have developed, we are now taking on more and more very complex cases. We now look after children who are ventilated – that sort of thing. A lot of very involved, complex care now takes place at Rainbows and I suppose as we build and become a Centre of Excellence that will happen more and more. Gradually we will acquire new skills and take on new challenges.”
I muse that it must feel good to be associated with the very best. “Oh yes, it’s nice to be associated with somewhere that continually strives to offer that level of care. I think I’m the sort of person who doesn’t like to do things by half or do a bad job of anything. I think as far as this hospice is concerned it’s nice to be up there with the leaders in the field and to be a leader not a follower.”
Will the completion of the Building for the Future project help with the delivery of more complex care, I ask. “I don’t think that the new build will be a complete change in what we do. It will be more of a transition. We’re not going to lose our teenagers for example.” (Under current law a Children’s Hospice cannot treat both under 18s and over 18s in the same building without separate bedroom blocks and this is a major focus of the Rainbows extension and development plans, ensuring both continuity of care and more care for teenagers and young adults.)
“I think it’ll be wonderful to be able to offer that continuity through into young adulthood because there is a big gap in the system before people are appropriate for the adult hospices which tend to be filled with the elderly and with cancer conditions. There is very little in the system for young adults with the chronic neurological conditions or those suffering at a younger age with malignancies. I’m sure there’s a need out there for it and I think, as healthcare improves as well, a lot of those teenagers are now surviving into adulthood. To me it’s a shame if we’ve looked after them all these years and then they are out into an abyss where there’s nothing for them. It’s against the ethos of caring for them and their families in their entirety if you can’t look after them after a certain age; if, say, you have to wave goodbye at 18 or 19 and you know that the services beyond that aren’t necessarily geared up for their specific needs.”
That’s where members of the public can help to really make a difference. Says Clare, “I think the most important thing is that even the 10ps and 50ps add up and even if you buy one brick – if everyone buys one brick – then you build a hospice don’t you? I think it’s always difficult in a time of recession as well because charities do take a hit and this place is so dependent on charitable work and donations. Rainbows just isn’t going to survive without them. I’m lucky. I go home and I am met by three lovely, happy, healthy children, but I always think, ‘that could have been me needing that care’. No family is immune from potentially needing the care Rainbows gives or by being touched directly or indirectly by it are they?
Certainly none of the families we work with here planned to be here and use the service. It’s not a life choice to have a terminally ill child.”
I’m keen to hear Clare’s views on the same subject. “That’s certainly something we are looking at very seriously. At the moment Sat does a lot of advisory work and so much behind the scenes. I think if those efforts could be coordinated into set sessions where you are geared up time wise and facilities wise, you can get a lot more done rather than trying to get things done on an ad hoc basis. If we could actually set up clinics and have us here to actually run through things properly in allotted portions of time, rather than grabbing hours here and there, if you can formalise it, then you can organise the service better and more people will benefit. So an outpatients service is certainly something that we are trying to get organised with the new building.”
Clare, like Sat, is also looking forward to having some dedicated medical space in the new build. “It will be nice to have an office here. Currently we have no designated medical space here at all. There’s no treatment room, no couch here – that possibly sounds silly – but there’s no medical computer here either. Of course one of the other team will always lend us their space and computer but Rainbows doesn’t currently have what I guess a lot of people would expect it to have. That said I am inordinately proud of Rainbows and being a part of Rainbows. I’m proud for the unit as it were, and a bit personally as well I suppose. It’s about seeing it expand and progress and take on more people and broadening the service. It’s wonderful to be a part of that and it’s something I’m looking forward to.”
With £700,000 left to raise in order to complete the Building for the Future project, I ask Clare what thought she would leave someone reading this piece with. Without bhesitation she says, “By reading this and donating 10p, £1, £100 you are positively changing the world of a family. Please help us help them.”