“People with Sickle Cell are seen as hypochondriacs or drug addicts. Even a nine-year-old has to scream to get the care they need”
Nine year old Jacob has sickle cell disease. His mother Sheree Hall doesn’t just understand the findings from the sickle cell patient experience survey, she lives them. As a working mum of two, navigating the healthcare service as a carer of a child with a long term condition, many of the experiences and challenges identified in our recent report are all too familiar.
In the below interview Sheree shares her day to day experiences of sickle cell disease, how it impacts family life and what more support and service improvements would mean to her personally. Her story is arresting, enlightening and highlights the importance of capturing and acting on people’s experiences in order to improve care.
How old was your son when he was first diagnosed?
I didn’t find out I had the Sickle Cell trait* (carrier of the gene), until I was pregnant with my first child, and I was tested. By the time I had Jacob – who is my youngest son, I knew there was a possibility he could also be a carrier or inherit the condition, but even then, when he was diagnosed, it was still a shock.
Did you know much about the condition before your child’s diagnosis, if not, did the service support you to be better informed?
Being a carrier doesn’t cause any direct symptoms so I really didn’t know – or need to know much about it.
Once I knew that Jacob had the disease, I wanted to know everything. Unfortunately I didn’t have a very good experience with my doctor and I had a horrific experience with my consultant. I don’t want to go into the horrible details, but I was more or less told to consider terminating my pregnancy. Rather than deal with his judgement and complete disinterest in my son’s condition, I found my own information and worked out what was best for us on my own – without my GP’s help. I’m not being dramatic or expecting people to sympathise, I didn’t do it to be a hero. It was just easier.
“I didn’t have a very good experience with my doctor – I had a horrific experience with my consultant. I don’t want to go into the horrible details, but I was more or less told to consider terminating the pregnancy.”
How has your son’s condition impacted your family’s day to day life?
In terms of everyday, it is just one of those things we live with, and get on with. We know he has it, and how best to manage it, and making sure he is ok is never far from our minds. I know he always needs medicine, his condition is affected by cold weather so he can never leave the house without a coat. Also, school for instance – I need to be sure they understand the support he needs. We have to be more cautious and stay aware that they are familiar with his care plan. There have been occasions when Jacob has collapsed at school and the school knew exactly what to do.
When he is going through crisis that changes everything, and has a massive impact on all of our lives. Depending on which hospital we go to, who we see, or even the timing of the crisis, the care we receive tends to vary, so I always have to consider lots of things and put plans in place for his care. Jacob comes first.
When he is in crisis I can’t go to work, I need to be – and want to be, with him at all times when he is in hospital. It’s the only way I get the peace of mind that my baby is safe and cared for. This has a big impact on our family life and has had a massive impact on my work.
Up until February this year Jacob hadn’t experienced a severe crisis since 2012, but he was hospitalised at the beginning of the year, and that has been a set-back. This was following him collapsing five times within the last eight months. The crisis had a massive impact on his body, and he now has to have blood transfusions for the rest of his life, every three weeks to keep him healthy.
“Depending on which hospital we go to, who we see, or even the timing of the crisis, the care we receive tends to vary, so I always have to consider lots of things and put plans in place.”
Do you have access to a support network of other families?
Yes and no. I was a member of a local community Sickle Cell Support Group for two years, and even fundraised for them but I didn’t find them particularly proactive. Over time I grew really frustrated with the casual style of the meetings and the lack of support provided. I would sit there, waiting for something to happen and after a while just started to think: “Why am I here? How is this really helping us?” The meetings had no structure, no purpose – they were just there.
Don’t get me wrong, I am sure they work for some people – just not my family or other families with young children. They are aimed more at older people, who for the most part, know about sickle cell and how to care for themselves. Less so for families, even though some youngsters come to the meetings as well , the group made no effort to engage or educate them, which as a mother of two children, who really want and would benefit from it, that was really disappointing to me.
So I left and contacted the Sickle Cell Society (SCS) four years ago. I’ve been working with and learning from them ever since. I am so passionate about the great work they do I have become a board member. It’s only through the SCS that I’ve been able to make friends with parents who have had the same experiences, which has been so helpful. The Sickle Cell Society offers a lot of help and support. With the friends I have made we keep in regular contact and we support one another with families sharing experiences and advice, on which hospitals are the best, and which to avoid if you can.
“When it all gets a bit much, and Jacob is really suffering, I sometimes sit there and ask myself; “Who do I talk to? Who do I cry to?” It can be very lonely.”
Other than my girlfriends, there is no emotional support provided for people affected by sickle cell. When it all gets a bit much and Jacob is really suffering, I sometimes sit there and ask myself: “Who do I talk to? Who do I cry to?” It can be very lonely.
Yet I am one of the lucky ones. I built a relationship with the Sickle Cell Society, so I can reach out to them. Not everyone can do that, especially for people who do not live in London where there is very little support.
“The meetings had no structure, no purpose – they were just there.”
Is there anything the service could do to make your life easier?
Jacob has been living with Sickle Cell for almost 10 years, and all I have found is that everything is a struggle. He’s had some terrible experiences – at what are supposed to be some of the best hospitals in London.
I have to take the lead on everything, down to setting up his transfusions. Dialogue between services is appalling. From my GP to our hospital consultant and community services – no one talks to anyone.
All I really want is support and a bit of empathy, but nobody seems to listen. Even just someone ringing up to ask “How are you doing?” and really wanting to hear the answer. It would mean so much. Some of my worst experiences have been of hospital treatment. When Jacob was rushed to hospital in February it took eight hours of waiting and assessments for them to actually admit him on a ward. They were so reluctant to give him any strong pain relief. They just did not seem to believe he was in pain. Either that or they did not understand. No one spoke to us we were just left to wait and see what happens until he was screaming constantly. It was sickening.
Even as a nine year old child, the attitude seems to be that sicklers are either hypochondriacs or drug addicts. When you are in hospital you have to literally scream and shout the place down to get the care you need.
For me, the only way to truly improve care for sicklers, would be for every hospital to have a lead person who understands the condition thoroughly. Someone who knows what patients need, how to support them and show empathy. It’s so important but so hard to find and not just for those people in London either.
“All I really want is a bit of support and empathy. Even just someone ringing you up, asking “how are you doing?” – and really wanting to hear the answer, means so much. Nobody listens.”
Do you find community services useful – if not why not?
They are very hit and miss. Following Jacob’s crisis in February, the hospital’s lead community nurse was supposed to co-ordinate discharge and in our case, was supposed to connect Jacob with counselling services, so that he has someone to talk to. But it’s been three months since his crisis, and she has done nothing. If I didn’t chase things up and make things happen myself, they wouldn’t happen. And that is exhausting. Who can Jacob speak to about how he is feeling and what he has gone through? Other than me, no one.
“The Community Support nurse was supposed to co-ordinate Jacob’s post discharge counselling. It’s been three months since his crisis, and she’s done nothing. If I didn’t chase things up and make things happen myself, they wouldn’t happen. And that is exhausting.”
The patient experience survey findings showed that awareness and information provision are lacking, does that surprise you? Would you agree with this?
Without doubt there is definitely a massive difference between A&E and specialist care for sickle cell. When Jacob was last in crisis, we walked into A&E at 9pm and he wasn’t given morphine until 2am. They just kept giving him Paracetamol, which barely scratches the surface of chronic pain.
I’m not a doctor, but I’m fairly certain that clinical care guidelines show that level of pain needs immediate treatment. Whenever Jacob needs emergency pain relief, he has to prove he is in pain. He’s nine years old. Even when he was screaming down the halls (and could have been heard two floors up), he didn’t get onto the inpatient ward until 4am – seven hours after we walked in.
It’s not just A&E care that needs major improvement. My GP generally doesn’t know a lot about sickle cell – or seem to want to. She just follows my lead. Visiting her seems pointless, so I just don’t go, it’s a total waste of time.
“Visiting my GP is a total waste of time”
How does Jacob’s condition affect his personal well-being?
Well, because of his age, he sees his care through my eyes a lot of the time. He’s young so there is a lot he doesn’t understand – and I don’t want him to yet, but on the well-being side, it’s hard on him.
He has blood transfusions every three weeks, so is very aware that he has sickle cell. Every now and then he has aches and pains that mean he can’t play with his friends like he wants to. It’s frustrating for him, and it frustrates me for him.
He doesn’t really know anyone else with sickle cell his own age, and I think that can be really hard. I would love to see some kind of buddy-up system, where children can share experiences and talk about how they feel. Crisis can be really physically and mentally draining, and so frustrating for him.
Having the opportunity to talk about his feelings, with someone other than his mum, about what it is like to grow up as a sickler, would be life changing for him. I can teach him to take his medicine when he needs to and always put a coat on, but who does he talk to when he is feeling sad?
Through the Sickle Cell Society we have created a mums network, where we can offload on each other, but there is nothing for kids, and it is so needed.
“He doesn’t have anyone else he can talk to, other than me. I can tell him to and teach him to take his medicine when he needs to, and to always put a coat on. But who does he talk to when he is feeling sad?”
What is your opinion of the care you and your family receive?
I’ll put it like this. When he was in crisis earlier this year, we arrived at 9pm and waited five hours for pain relief. Five hours. He was asked: “Out of ten how would you rate your pain?” He replied: “100”. They did nothing. He was screaming until he went hoarse: “I need pain relief, I want to die!” Still nothing. They made him wait in agony until 2am, when they finally gave him some morphine. As a mum, that is the most terrifying thing ever. My baby wants to die because he is in so much pain, and no one but me is helping him or taking him seriously. And there is nothing I can do about it.
When he’s not in crisis, it’s ok but never great. Any given day can be different with sickle cell, so it’s all relative. Some parts of the service are awful and others are better. None of it is good enough, if I wasn’t so proactive, we would really struggle.
Visit the Sickle Cell Society website for further information about the condition and support available for people affected by it: http://sicklecellsociety.org/
*Sickle Cell Trait
Sickle cell trait means that you carry a gene for a serious condition called sickle cell disease (SCD). This in itself does not normally cause problems and sickle cell trait is not considered as a disease.
People with sickle cell trait are well, and will usually only know about their trait if they are tested for it. Pregnant women and couples planning children may want to know whether they have sickle cell trait, because if both parents have it, their child might inherit SCD. In England, tests for sickle cell trait and SCD are offered to pregnant women and new-born babies.