In March, she began being sick again. It was thought that it could be her reflux returning and she went back on medication in the May. Her sickness continued though, and she didn’t want to eat much food. She was losing weight steadily, but the professionals thought she was being a fussy eater and it was a behavioural thing. Elsie always seemed to pick up bugs from other children, more so than her older sister ever did. And in the June, she got chicken pox too. A couple of weeks after this, she was very lethargic and wouldn’t walk or eat for several days and was still being sick. We took her to hospital and they said she was constipated and needed different medication for her reflux. We went home with more medication, but her condition did not improve and she began having waves of pain and crying out for a few hours every day.
Within a week, we were back at hospital. This time, they discovered a faecal impaction and told us to stop all reflux medication and begin treating the impaction. We saw a consultant that week, who told us to wait for the impaction medicine to work and return in September when they could then start to find out what was causing the sickness.
Over the next few weeks, we waited for her condition to improve. It didn’t. She was getting steadily worse: rarely walking, playing, eating, sleeping or talking and only wanting to be cuddled. She was still having waves of screaming in pain, so we took her to have an X-ray to check the faecal impaction had gone. The results showed her bowel was clear, so we pushed to get an appointment before September, as we didn’t know what was causing her pain, sickness and lethargy. We managed to get a hospital appointment at the end of July, after many doctor’s visits and health visitor checks. They needed to discover where the issue lay before being able to refer us to the relevant department at Alder Hey, so they did tests for Coeliac disease and Crohn’s disease. They came back negative. I pleaded with the doctors to find out what was wrong with her, because I felt like I was watching her waste away. By this point, she had begun pulling her own hair out, and nothing we did made her stop.
On Thursday 8th August, they admitted her to hospital so they could do all the relevant tests on her, without having to wait weeks for appointments. She had ultra sound and x-ray tests which came back clear and an MRI scan which appeared normal at the time. She was going to be allowed to go home for the weekend, before undergoing more tests on Monday, but she wasn’t taking in any food, so they decided to keep her in and feed her through a tube. On the Sunday, she began fitting, her condition deteriorated quickly and she was rushed in an ambulance to Alder Hey HDU, with suspected Auto Immune Encephalitis. On the Monday, doctors tried to do tests on her to confirm their suspicions, but her blood was not clotting and she was struggling to breathe. The decision was taken to place her in a coma, to assist her to breathe and get the tests done without upsetting her further. She was transferred to PICU and was put on life support. They looked again at the scans from the previous Friday, and discovered there were signs of inflammation in the brain. They repeated the MRI scan and found that the inflammation had spread. After many more complications, they discovered her ammonia level was over 800, when it should have been more like 70. This is when they thought that the cause of her illness was actually a urea cycle disorder called Ornithine Transcarbamylase (OTC) deficiency. This is a metabolic condition that she was born with, but had never been discovered. She underwent dialysis to clean her blood and remove all the ammonia. The treatment worked and her levels were brought down to normal amounts. On Thursday the 15th August (one week after being admitted for routine tests), they did another MRI scan to check what damage the ammonia had done. They took us to a private room and told us her brain showed no signs of normality. ‘Are you telling us she is going to die?’ asked my husband. ‘It depends what you class as dead,‘ replied the doctor, ‘she is already brain dead’.
Our nightmare did not end there. We were informed that OTC deficiency is a genetic mutation and is therefore hereditary. Both myself and my other daughter had to be tested as well. We were faced with the task of explaining to our 4 year old daughter, not just that her sister was going to die, but that she had to have a blood test done to see if she had the same condition too.
We did not find out the results of our tests until the end of October – a wait of 2 months. It was during this time, that we discovered the lack of bereavement support available to us. Luckily for us, when the results came, they showed that neither of us has OTC deficiency: Elsie was the first to have the genetic defect, which meant it was a mutation that occurred at some point in the cells that created her. This does have implications for us if we ever decided to try and have more children, but the relief of knowing our other daughter is safe from at least this disease, is a great comfort at such a traumatic and horrific time.
The issues we discovered when searching for bereavement support
When Elsie died, my priority was ensuring my surviving daughter, Florence, got the support she needed to help her through such traumatic events so early in her life. It was then that I learnt about the difficulties of getting adequate face to face support for children who are grieving, as well as adults who have lost a child. As I continued to research possible support available to us, I was horrified to discover that the bereavement support in Cheshire West and Chester is even more restricted than I had first thought.
Because our daughter died at Alder Hey, we were offered support from the Alder Centre in Liverpool. However, we found it too traumatic to return to the place where Elsie died, and I did not have the concentration span to drive all the way to Liverpool safely. Furthermore, my daughter had just started school, and I couldn’t take her out of school every week for 3 hours to travel to Liverpool and get help for her. I asked them if they could suggest a counsellor nearer to our home in Chester – they couldn’t. They could only see us if we travelled to them. I thought this was a real restriction to their service, especially when so many people travel long distances to access their specialist care in emergency circumstances. Surely there will be other families living in North Wales and Cheshire, who will be travelling back home after the worst possible nightmare of their child dying, only to be told that they can’t access bereavement support from where they live.
I was told to contact my G.P to access counselling for myself. When I did this, the G.P had to go away and find out where to get support – they didn’t seem to have a secure procedure for dealing with these circumstances and knowing exactly what support was available and from where. Eventually they contacted me, and told me that I would ‘probably be able to get some help from the local hospice’. I did this, and was told there was at least a 3 month waiting list. I felt that whilst I was waiting, perhaps I could join a support group to meet other bereaved parents. I found out about a support group for parents who have miscarried, had a stillbirth or lost a newborn. But their central office told me that my daughter was too old when she died, so I couldn’t join their group. I found out about a general bereavement group, enquired about it, but they felt it wouldn’t be suitable for me, as tends to be made up of older members who may have been widowed.
Simultaneously, I tried to get support for my daughter, who had not only just lost her sister, but was facing tests to see if she had the same disease she had just seen her sister die of. Being a teacher myself, I pursued ways to get her support from the education sector, only to find that the only facility available was CAHMS, and that was only for children who have ‘moderate or complex mental health issues’ – a state that my daughter was thankfully not yet in. There seemed to be no facility for giving children the support they need, before it develops in to an issue. The school my child is at does not have a learning mentor or pastoral care worker. They only have a family liaison, who visits once a month. They were unsure of how to support a bereaved child, which led me to realise that schools need support and advice on how to best support bereaved children. After all, children spend most of their time at school and, after a bereavement, will look to the adults and children around them for understanding.
I eventually sourced her some support from the Hospice where I was to have my own support. Again, there was a 3 month wait until she could be seen. There was no advice or help in the interim. I looked in to getting her some sort of music, art or play therapy, but sessions were £25/£30 each and they recommended 10 sessions – having just spent money on a funeral, facing months off work with no ‘bereavement leave’, I could not afford to pay £300 for her to have these therapies.
It was this journey of discovery that led me to research exactly what bereavement support does exist in Cheshire, and where the lack of support is.
I began researching national bereavement charities to see what support we could get. Winston’s Wish, Care for the Family, Compassionate Friends, Cruse,… NONE of them had a local support group or face to face support in our County. Many of them did not even signpost the hospice as a place where we could get support. When I looked at the North West, many searches came back with ‘0’ results, or just signposted charities based in Liverpool or Manchester – again too far away, and often not accepting people outside of their immediate area: The Butterflies project, Rainbow Trust , Dove Service. All of these are beyond our immediate area, and therefore, do not see anyone beyond their immediate remit.
I contacted local support groups such as, SANDS, Rainbow Babies, Claire House Hospice and St Luke’s Hospice, but each of them has particular criteria that people have to meet to get support, and none supported our situation. This is not their fault, it is all due to lack of funds. There is such a big demand for bereavement support, that they can’t accept everyone. Each has to prioritise different groups of people, but there is no structure in place to ensure that all types of bereavement are catered for. The hospice services are stretched to the limit. They are trying to raise over £6800 per day to keep the hospice open – only 26% ish of which is funded by the government. The NHS don’t have funds to support their own bereavement services, so they rely on charities, such as hospices, to raise funds from the public in order to provide people with counselling and advice.
From the research I have undertaken, and the doors that have been closed to us as a family, I have discovered many gaps in bereavement services in Cheshire.
Firstly, the existing support available was not signposted by Alder Hey. They asked us where we lived and handed numerous booklets to us, none of which were relevant to us as they would not offer us support as they were based outside Cheshire. Local hospitals should be provided with leaflets to hand out to Cheshire residents, to point them towards relevant bereavement services for them.
Secondly, the G.P did not know where to seek help and therefore, their signposting procedure needs to be improved as a first port of call for many bereaved families seeking support. Perhaps a central leaflet could be distributed, covering all aspects of bereavement support available in Cheshire. Furthermore, a central website would be useful, which outlines available bereavement resources throughout the county (hopefully now this website serves as a signposting tool). G.P’s should also be knowledgeable on these support systems, so they can discuss and recommend them straight away.
Another area of lack is the support available to schools. The education service does not offer support, guidance or advice to teachers trying to support bereaved children. It would be useful if there was a bereavement team to visit children in school (so it wasn’t left to the stretched resources of the hospice). The least they should offer is a telephone advice system where teachers can find out what to do to support bereaved children. INSET training on bereavement support, as well as writing and implementing a successful bereavement policy, should be offered to all schools regularly. Surely a proactive approach would prevent children’s issues from progressing and turning in to problems where (the already stretched) CAHMS team would have to intervene.
The support offered to children from the hospice is counselling – talking therapy. For younger children in particular, it would be great to offer them play / music / art therapy, or give them a grant to access the support themselves.
The coverage of support across Cheshire as a whole county is not consistent. Where you live determines whether you have access to support. For example, in some areas of the county, if a relative died of anything other than a terminal illness, you would be turned away from support. This is not the fault of the Hospice – they have had to limit who they take due to lack of funds. With this in mind, people bereaved due to suicide, murder, car accidents, other types of accidents or sudden unexpected deaths, would be turned away from support and not told where to go for help, simply because there isn’t any help available.
As it stands, there is no bereaved parent group, because it doesn’t come under anyone’s objectives. Because there is no children’s hospice in Cheshire, there is no professional body responsible for setting up a bereaved parent group.
It seems that it is no-one’s job to ensure all types of bereavement are catered for. Therefore, there are huge gaps in bereavement support, with families trying to search for help by themselves at a time when doing the most simple of tasks is hugely difficult as it is.
It seems unthinkable that both adults and children are being turned away from getting support, when they have already faced the worst possible loss in their lives. If you ask anyone what their worst nightmare would be, I would guess that any parent would say ‘the death of my child’. So why are we not providing support systems to help people who are facing their worst nightmare? Why is it that children whose parents have died in the most traumatic circumstances such as suicide and murder, are being told they can’t access support?
I hope that by identifying some of the huge gaps that exist in our county for supporting bereaved people, we can begin to make a difference to ensure people are supported at their time of need.