Mandy Doran, Building for the Future
Mandy Doran, Building for the Future
In a series of up-close-and-personal interviews we get to look behind the scenes of Rainbows Hospice for Children and Young People. 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 third interview we speak with Mandy Doran, Senior Nurse, Bereavement Support Coordinator and Deputy Head of Family Support at Rainbows.
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As I meet more of the staff and volunteers at Rainbows I become more and more aware that many of them have been here for a very, very long time. Mandy Doran is no different.
“I came four months after Rainbows first opened,” she tells me. “When we first opened it was a very different building and a very different place in every sense. My background is in intensive care and high dependency. There you had a very specific role and remit. Here you were, and did, everything. You could be helping a child one minute, you could be doing the laundry the next … even being the chef on occasions, and in my role, next I could be out and planting in the Remembrance Garden. You did everything. We used to do the ironing at midnight! When we first opened we didn’t have housekeepers, so it was all hands on deck to get the rooms ready.
We were a very young team too and so were the Doctors we had – Sat included – who at time had an interest in Palliative care, he is now very highly thought of throughout both hospice and hospitals but it would be true to say that they relied heavily on the nurses to show them the way if you like, in a lot of respects and we worked very much as a team.”
The importance of the team and teamwork is something that I have heard spoken about an awful lot at Rainbows. I had assumed, wrongly as it turns out, that this had evolved over the years. Says Mandy, “Oh no. From day one the Doctors asked for the teams opinions and listened to those opinions. It was very much a team – it is still now – but it was a very different team then.
One of the big issues we encountered, just after we opened, was the national shortage of Registered Sick Children’s Nurses. As a result we had to multitask. It would be frowned upon and probably not acceptable today, but back then we’d do nights, days, sleep a few hours – go back on duty. We never shut the doors and that was hugely important.”
As we talk I remember my conversation with Dr Sat and in particular the conversation about being pioneers. It’s something that Mandy also talks about. “We were the sixth Children’s Hospice to open in the UK and that’s something that I’m hugely proud of. We were innovators in terms of things like the Palliative Care Forum. Sat and I were part of the team that set that up. It’s now nationwide and part of and run by Children’s Hospices UK. As well as being the sixth Children’s Hospice in the UK, I was only the second Bereavement Support person in post in a Children’s Hospice. Shirley Potts was the first at Derian House Children’s Hospice. She now teaches on bereavement at Liverpool Hope University.”
I ask Mandy to tell me more about how things have developed at Rainbows over the years. “Well, one of the things that has changed over the years is bereavement becoming a part of the Family Support Team. Jo Simms is Head of Family Support and we used to work quite separately. I worked in bereavement – pre bereavement and post bereavement – and Jo worked in referrals and the community and those two areas needed to come together in part because, as Rainbows became better known in the East Midlands and beyond, it was a fast growing area. Hence Family Support became a Team in its own right.
At one time I was doing all the bereavement support for all of the families. At one time I did know every child in the building, but I can’t say that anymore. Now I usually meet parents and their children when – potentially – their child can no longer be actively treated. A lot of the families, the majority of the families, I do meet and I do get to know their children. As I get older, and one day I will retire, it’s about trying to impart my knowledge and support – all that I suppose is up in your head – to the Family Support Team. Over the years we’ve also developed things like the Bereavement Care Plan. I started writing that when I was working on my own to make life easier, but now we’ve been using it for seven or eight – perhaps even nine years.”
At Rainbows, Family Support and in particular bereavement is all about giving families choices. Families are able to pre-arrange what they think they would like when the time comes. Mandy stresses however, that no plans are ever set in stone. “We can change any plans made or discussed. We’ve found that having those plans in place helps when death does occur. The family hasn’t got to think ‘oh God, now we’ve got to sort this all out now’ because we can work from their Bereavement Care Plan and do whatever they want. We can listen to what they say and we can work to make it happen with minimal intrusion into their lives at such an important and precious time. We know they don’t want to be here, but we can’t change that. What we can do is help to support them. I often say to families when I first meet them, ‘I know I’m the last person you want to meet’. I wouldn’t want to meet me so why would I want them to? Meeting me means that potentially their child can no longer be actively treated; that their child is reaching the end of his or her life, and that’s an extremely difficult thing for any family to know and accept.”
Part of the bereavement support offered by Rainbows is the Remembrance Day Service that is held every September with all families invited back to celebrate and remember their child’s life. Bereavement support is also offered to the siblings as well as the parents. Says Mandy, “At one time I used to head Sibling Support. Now I work with a lady called Sally who has built up the Sibling Days over several years. I always say that Sally could do without me, but I couldn’t do without Sally. She’s brilliant, absolutely brilliant – and the development of Sibling Support is all to her credit. Rainbows now offers post bereavement support to siblings for up to five years post bereavement. We also run Parent Groups for bereavement for the first year of bereavement and we also offer one-to-one support. What we offer is support, but we don’t counsel – there’s a huge difference.”
Mandy and the team also talk to parents about organ donation. That has to be a difficult subject to broach I say. Mandy smiles gently, “A lot of parents think that because of the complex needs of their child or children – in their own words ‘they’ve got no worth’. They have, both in life and in death. Only the other week we had a family who very courageously donated their baby’s heart. They donated the heart completely and as a result four babies will benefit and potentially have life, and the remainder of the heart will be used for research. I do think that some Doctors are still very frightened to talk about donation. You see, you have to understand the culture of a hospital. Their culture is ‘we cure people’. Of course, in most cases, organ donation happens when someone dies. That’s not what a hospital is there for – death.
When people come here … oh, we’ve had parents sit in the car park for hours before they dare come in. Some parents pick up the ‘phone perhaps 20 times and each time put the ‘phone down again before we answer. It’s very different. Children’s deaths are very different to adults because, for one thing, it’s the wrong way round. For grandparents it’s obscene because it’s totally the wrong way round. They grieve for not only their children but their grandchildren too and all the time they are thinking that they’ve had a life. There’s an awful lot of guilt sits on it. But to actually pluck up the courage to come through our doors you’ve actually acknowledged to yourself that your child is going to die because the criterion of a child coming to Rainbows is that your child will not live into adulthood. So the courage it takes to even get in the car at home and drive here – that’s where it all starts. You know that you’ve allowed your child to be referred here and it’s all part of the grieving process.”
I ask Mandy whether she’s able to give me some sort of insight into the life of a parent who has a life limited child. “It starts as it does for all soon-to-be-parents. When you become parents your life changes. When you’re pregnant you have all the wishes and dreams; it’s going to be this or that – all sorts of things. Then your baby is delivered and perhaps not straight away, perhaps some months or even years down the line, you’re told there’s a problem. Then you’re told that actually the problem is that this baby or child is not going to live into adulthood. Then you go from being a family to having in quite a lot of cases up to 100 different people every month involved in your life. These people will be medical – physiotherapists, dieticians, respite care – to places like this, to special schools, to specialist health visitors, to case conferences, to doctors, to consultants …. the list is almost endless. Your home then becomes an intensive care unit for want of a better phrase. When you go into one of these families’ homes our chaos is their norm. They don’t live like you and me. They may have had to have oxygen piped through so they’ve got BOC involved. You’ve got delivery men bringing nappies; you’ve got delivery men bringing food.
The baby or child dies and that all stops – immediately. All your benefits stop at midnight. Your mobility vehicle gets taken back and then some kind soul says, ‘it’s been six weeks – it’s time you got a job’. That’s the world these parents live in. They’ve lived in a world of detail, when their baby or child is fed, when it’s time for medication, where they need to be when. So when the end of that baby or child’s life is reached, the attention to detail remains just as important and possibly just as difficult. That’s why I mentioned the Bereavement Care Plan – which can help enormously.
Detail and the detail of their child’s life matters hugely and we are here to let them know that we know it matters. Their child has value, a huge value and that needs to be acknowledged. Sometimes though I think parents feel that wider society doesn’t see that. I’ll give you an example. A family I’ve been working with very recently lost their baby son. They put the announcement of their baby’s death in the local paper and the paper got it all wrong. They got the date of his death wrong. For the grieving parents, the fact that their baby son was seven months and one day matters. It matters that the paper spell his name right. They ring up and it’s someone else’s fault. I’d ask them how they would feel if they were in the position of the family, which you would never want them to be of course; but if they were in that position they would understand why seven months and one day matters; that one day matters. The fact that that baby boy had a birthday for being seven months old really matters. The fact that he lived another one day also matters.”
I talk to Mandy about what Dr Sat and Clare have said about how the ‘Building for the Future’ project will help them and their work. I almost apologise for asking the same question of Mandy. How would the ‘Building for the Future’ project really help in light of what she has just said? Mandy smiles, “The ‘Building for the Future’ project is extremely important because of what it will give our babies, children and young people – whether they live for seven months and one day, seven years and one day or twenty-seven years and one day. You have to look at it on the three levels; the children and young people, the families and the siblings.
For the children and young people it means that they are going to have better facilities. We have got good facilities now. Our multisensory room for one is brilliant. It’s the most used room in the Hospice but it’s also one of the smallest rooms in the Hospice. To be able to get perhaps a bed or even the wheelchairs in there so all the children can go in would be great. In the new building we will be able to hoist them so that we can move them from their chair into the space which means that more children and young people will be able to enjoy the new space. We’ll be able to work with them in an area that they are comfy in which is going to be phenomenal.
We’ll be able to show a film in a cinema environment which will be great. Our children and young people will have a choice in-house to visit the ‘cinema’. There will be no hassle, no-one staring at them – because many people still do. Many people still stare at the wheelchair first and bypass who’s in it. For a lot of our young people, yeah they are in a wheelchair but some of them are at University, some of them have got jobs, some have got girlfriends. You know, they have a life, but some people just don’t see past the wheelchair. The wheelchair is a mode to get around – it’s their legs – it doesn’t stop them from being a person. So having the extra facilities like a room that can use to give a cinema experience to our children and young adults gives choice and flexibility to them. We’ll also have a hydrotherapy pool and I think that is going to be massive because those with muscular conditions especially – when you’re in water, the water helps the muscles and they have much more freedom than what they ever have otherwise.
It’s going to mean that our young people are going to get more time here at Rainbows because we will be able to cater for both children and young people at the same time. Currently if we have over 18s in we cannot have under 18s in because we only have one bedroom block. To build a new bedroom block is a major part of the ‘Building for the Future’ project and will mean that if we’ve got a 20 year old and an 18 month old both in need of respite care or end of life care, the two will be able to come into Rainbows at the same time. The project also means that with the extra space and facilities we will have, the 20 year old can be treated as a 20 year old. At the moment we struggle for space and, for example, our playroom caters much more for the younger children. Our teenagers and young adults find it totally boring and inappropriate. So it means that we will be able to mix and match age groups, activities and so on.
From a parent’s point of view, they’re going to have the opportunity for more respite care. Of late we’ve had to cut down the number of nights their children and young people can have because we have so many children to look after and we only have eight bedrooms. So that will change. We’re at long, long, long last going to have a dedicated room where we can see parents in Family Support. At the moment, like the Doctors, we beg, borrow and steal rooms. Then something happens and we have to try and find somewhere else. Space – that’s going to be a premium that is! We already hold Parent Carer Groups and Muscular Dystrophy Group and the completion of the project means that we’re going to be able to have areas that we can actually use to hold these groups in without fear of having to move at the last minute!
From a sibling point of view we’re going to be able to do more things in-house instead of going out and beg and borrowing or paying a reduced fee to use someone else’s space. Don’t get me wrong, people are brilliantly generous. We’ve had local taxi firms who’ve taken siblings to Skegness and back free of charge. We’ve got coach companies who offer a substantially reduced rate … you couldn’t do this without them, but again the increased space will give us other options too. We’ll be able to save people’s generosity for the really special things.”
Mandy has struck me as a very generous and gentle person until, that is, she gets onto the subject of the Government. “I have to say that I do believe that the Government at some point in their lives is going to have to look at how they fund Children’s Hospices. They currently contribute just seven and a bit percent per year. In my view they pay that because they know – in their heart-of-hearts – that there is nowhere else for these children and young people to go. Nowhere else for them to access the respite care, medical attention and end of life care that we offer. If they came out and lived in the real world for only a few weeks, they would see that.
I do get very cross at some of the stuff you hear, like the expenses scandal and politicians moaning that they don’t earn enough for what they do, of course I do, because these parents have to earn a living too. We’re paid to do a job and most of us take a reduction in salary to do this job, but we do that because this is what we want to do. The bottom line is we all work to live, so should everybody else. The real world for the parents … the Government makes it so difficult. Years ago we were part of another group that The Joseph Rowntree Foundation heard about and really picked up the issue we were campaigning about. They campaigned really hard, but in the end we didn’t get the change we wanted. The issue we were all talking about was trying to get a benefit for these parents for up to a year after their child had died. As I said earlier the benefit currently stops at midnight of the day or night of your child’s death. Recently some of our leaders have experienced the death of a baby or child themselves and in that respect, as far as I am concerned, they are bereaved parents and should be treated equally. What I’d ask them to do is to put their professional heads on and with their own personal experience show a far greater understanding towards the parent’s point of view and the parent’s needs.
I also mentioned earlier about the fact that parents are told to go back to work six weeks after their baby or child’s death. Many of them are just not able to go out to work after six weeks. They are just not capable of doing it. We’ve had parents who’ve had four children die. Their whole life has been about caring for their children. They’ve never done a CV. They’ve possibly never had a job, or certainly not for a long time. The workplace is probably a very different place from when they were last in it. These parents are great working as high dependency and critical care teams and they can wheel drugs off that are scary, but they might never have held a job down. How do you expect them to have the courage to pick up a ‘phone or actively look for a job? That’s another area that we support them in. We will arrange appointments for them to be seen at job centres. I’ve driven parents to job interviews myself and said, ‘OK, I’m going to sit out here and wait for you to come out. You need to do this’. We can support them like that. That’s a way of being positively supportive. Most of our parents don’t need counseling – they need support, support and time and the Government can help with that if not with the wider issue of Children’s Hospice funding. Another thing that the Government is going to have to think about and face at some point in the not too distant future is the fact that with medical advances children are reaching young adulthood. Why shouldn’t a young person with Muscular Dystrophy have hopes of living with a girlfriend? What needs does that person have in order to, for example, live with a girlfriend? How is the Government going to provide for this in the future? We have to ask ourselves some very difficult questions including why are we working so hard to keep these children alive if we’re not prepared to provide the facilities and the care that they need because they are living longer? It’s not always about quantity. Life, for any of us, should be about quality not quantity.”
Mandy finishes speaking and looks at me. I’ve stopped writing and am, I’m afraid to say, just sitting there looking back at her. Mandy makes an awful lot of sense and it’s not hard to see why parents and colleagues alike hold her in such high regard. In fact while I’m talking to Mandy two families pop in on the off chance just to see her and she excuses herself and goes to see them. Later, when I mention Mandy’s retirement plans to another colleague, they look at me aghast and say “Oh no. Mandy just can’t retire! What would we do without her?”
Mandy looks back at me and laughs. “Sorry,” she says, “I do get very passionate about this whole issue. What would you like to ask me next?”
I refer back to my notes (before I had stopped scribbling). We were talking about the ‘Building for the Future’ project, I say. “Oh yes,” she says – and she’s off. “So the new build is going to be of multi-purpose benefit to all parts of the family. It will have a knock-on effect. Young people are going to have the opportunity to be more independent. That is going to enable parents to spend more time with other siblings and with each other.”
Mandy asks if I am aware that the highest rate of divorce is with bereaved parents. It currently stands at 87%. “87% of parents who are bereaved of a child will either separate or divorce because what happens pre-bereavement is that their relationships get put up on a shelf. You don’t even get the chance to dust it down very often. Rainbows only offer 10 days respite care per year. That’s not long to be on your own or with your other children is it? When you do take your relationship down from off the shelf you are often two very different people. Sometimes parents don’t even know if they like each other anymore. They almost certainly don’t have a lot in common with one another. One of the things that we do here is encourage them to spend time with each other and with other siblings and do things with the siblings that they wouldn’t normally have the time to do. Go out for a meal as a family or just the two of them, settle on the sofa and have a bottle of wine. Take time out to do all the things that you’ve forgotten to do. Talk to each other, listen to each other.”
I wonder out loud who listens to Mandy. “Oh I have my family, but I’m very good at being able to sit for a moment in the car and then switch and do home stuff. Some would say that what we do is an incredibly difficult job. I’d say that we are also incredibly lucky because when we’re dying – well death is a bit like birth; it’s very intimate and very private. To be alongside these parents is a privilege because you do share, for a very short time, a really intimate side to their lives. You are privy to stuff that probably other family members have no idea about. They don’t necessarily share what’s going on with the wider family, and to trust you with that – it’s a lot isn’t it, really?
One thing that I should also mention is that we have worked with our young people and asked what they want as they approach their end of life. As a direct result we’ve developed the Living Will and Advanced Directive for use within the Building. It’s important that our young people can make their wishes known. They are now saying very clearly what they want to happen in their life and at their death, when potentially they are no longer able to speak. Not all of them want to be fed through a tube into their nose and into their stomach. Not all of them want to be kept alive. Again, it’s about quality of life not quantity. It makes you look at things again and it puts things into another very different perspective.”
I tell Mandy that I’ve asked each person I’ve spoken with what they would say to someone reading this article, especially given that Rainbows still has £150,000 left to raise in order to complete the ‘Building for the Future’ project. “I think I’d say thank you,” says Mandy. “Yes we’ve got to raise £150,000 but we have already raised over £3.8 million and that should be acknowledged first. Of course that’s on top of the £2.8 million that is raised each year just to keep the Hospice running. If it wasn’t for the people raising that huge amount of money you and I wouldn’t be sitting here. Our parents, their babies, children and young adults would be sitting in an ITU or in a side ward and there would be even less support post-bereavement. What we do here at Rainbows is Palliative care, and we do it very well. We do end of life care, and we do it very well. We support bereaved parents and siblings, and we do that very well too, but there’s always more you can do. I’d ask people to help us do what we do really well. I’d just ask them to help us to do more of it.”
