I normally do not write about current emotive news on this site, but the story of Ashya King is so compelling that I feel I have a duty to share what I know about the children cancer ward at Southampton General Hospital.
Twelve years ago, my son was treated at Piam Brown Ward, children’s oncology and haematology centre for the Wessex region, based at Southampton General Hospital. This was the same ward that had also treated Ashya King, until his parents Brett and Naghemeh King removed him from the care of the hospital and travelled with him to Spain.
Five-year-old Ashya King suffers from a grade four medulloblastoma on his spinal cord at the base of his skull.
Have we got the full facts about Ashya King’s treatment?
It seems to me that many people have taken the family’s side against the hospital. The general belief was that the NHS doctors at Southampton have been medically arrogant and have blocked the child from going to Prague for proton beam therapy treatment. In the news, we have followed the drama unfolding — arrest of parents, their imprisonment, outpouring of public sympathy, and thankfully, the parents’ release and reunion with Ashya. However we don’t seem to read a lot of reports from the doctors from Southampton, who assessed Ashya and treated him and also removed his tumour.
My son in the same cancer ward in Southampton
My son suffered from another form of tumours (Langerhans cell histiocytosis – LCH) when he was 13 months old in 2001, and he has just been discharged from the hospital earlier this year.
In the past 12 years, we had very close relationship with this children cancer unit at Southampton General Hospital.
Life in a children cancer ward
What is a children cancer ward like?
To many, the world of children cancer is a mystery, and today I’ll tell you what I experienced as a parent when I was staying in the cancer ward for weeks at Southampton General Hospital with my very sick child.
At Southampton General Hospital, we were kept informed of every single medical procedure, and every single stage of his treatment. The ward round every morning by the registrar was thorough. Home care was also provided. Community nurses visited twice a week at home to flush my son’s central line.
We were greeted by the oncologist Dr Radford, when we were transferred from Royal Hampshire County Hospital (RHCH) in Winchester. The oncologist always emphasised that he would be ‘doing my best’. There was never a guarantee if the treatment would work, or whether our child would be ‘cured’.
Family life and accommodation in hospital
Some families travelled far to reach Piam Brown Ward in Southampton for treatment, such as Bournemouth and the Isle of Wight. Some of these families tended to stay in free accommodation close to the hospital. The facilities were provided free by some charity, so that family (and sick child’s siblings) could stay together and receive support through the hospital and the charity. By staying closer to the hospital, it also helped reduce stress and travel cost of the family. At weekends, the ward got busier as more siblings and family members of the sick children would also come to visit.
School in the hospital ward
Children attended school, which was within the ward. Children’s artwork adorned the walls of the corridor. Some children attended their lessons with machine and tubes attached to them. My son was only one year old so he played in the playroom instead. There were many donated toys and an endless supply of children’s videos in the playroom (including the Tellytebbies).
Play and leisure
There was a dedicated play worker in the ward. Her job was to ‘play’ with the children, and made sure children were not without relaxation and normality.
There were a few times my son and I ended up in an isolated room. The world was cut off from you. Luckily the play worker would come in to help me some afternoons, to allow me to get out and get some fresh air.
What if the medical treatment didn’t work?
CT-scans, operations, treatment plan, risks and side-effects were all well explained to us. We were given a 6-month treatment plan, which included chemotherapy treatment and steroids. Unfortunately, the initial treatment did not work, as the tumours were not shrinking fast enough. The new oncologist Dr Kohler (as Dr Radford had retired) told us that she had sought opinion from Great Ormond Hospital, and were keen to extend the treatment with increased dose of drug for another 6 months.
We trusted our oncologists in their expertise and guidance in every step of my son’s treatment and recovery. My husband and I both believed we could trust the top medical consultants and their team to provide the best possible care.
I met some families in the ward who told me they also used complementary medicine alongside the mainstream treatment in the hospital. A family whose daughter was critically ill also tried acupuncture and homeopathy. Some of my friends suggested we tried high-dosed Vitamin C treatment or pure ginseng. Some people told me that it was dangerous for such a small child to receive chemotherapy treatment.
Living like a family
Life in a children cancer ward can be remarkably normal and calm. Once the diagnosis was confirmed, parents would be busy dealing with medical intervention. However we seemed to be living a ‘normal’ life there with a routine. When you have a very sick child and you sleep in the hospital ward for weeks, the ward becomes your home and you make it comfortable. I used the kitchen to prepare my own breakfast (as my son’s breakfast was provided for and was delivered to him) and even cooked simple meals there. I learned how to operate the dish-washer in the ward, as the nurses wouldn’t allow us to handwash the utensils – a nurse educated me that dish-washer was safer as the heat would kill bacteria. There were facilities for parents to take a shower, do laundry and even iron. Mothers would get together if they wished as in a toddler’s group. I remember a mother who preferred knitting quietly by herself, but some parents would socialise.
Cancer wards, like many wards with very ill patients, can also be a stressful place. Families are distressed. There were lots of tears and weary faces. However, I had never witnessed public confrontations in the cancer ward. Once a mum of a young cancer sufferer told me that she had to be sedated as she couldn’t stop screaming due to shock when she first heard of her son’s diagnosis with cancer. When she shared with me her anguish one day in the ward’s kitchen, we both laughed at ourselves as many of us had a story of our reaction of ‘when we got the diagnosis of cancer / tumour’ to share.
Infection and hospitalisation
Cancer children are immune compromised, therefore, during treatment time, we observed some very simple rules to reduce their risks of infection. We were educated to never give Calpol or other medicine to Ben when he was unwell. Most (if not all) children would have a central line (skin-tunnelled venous catheter) put in, as the child’s temperature could be a symptom of the central line being infected.
Central lines are used to give children chemotherapy treatment or other medicines, and can be used for taking blood. These devices avoid repeated cannula insertions in children when treatment is needed. An infection of a central line is common. Central line infection cause great harm to the sick child, and making treatment impossible.
Frustrating yet necessary treatment
My son was hospitalised many times, not because of the side-effects from the chemotherapy treatment, but central line infection. For each infection, he had to remain in hospital for at least 3-5 days, to complete the course of antibiotics, before the doctor agreed it was safe for him to be discharged. These were the most frustrating times. Sometimes Ben appeared to be fit and well, with rosy cheeks, and was chatty and sociable, but he had to remain in the cancer ward to complete treatment and for observation.
I asked if my child could be sent home to complete the antibiotics, but my requests were always rejected. I trusted that the specialists knew what they were doing and they thought hospitalisation was the best for my sick child.
Meticulous and dedicated medical team at Southampton
This personal experience was just one example to show you how meticulous and dedicated the medical team at Southampton General Hospital was to my sick child during our long stay in the oncology ward.
I remember very clearly that if Ben ever had a temperature lasting an hour, he had to be taken back to the cancer ward immediately. Quite unfortunately, Ben had high temperature very often and he was often re-admitted. Ben’s central line was repeatedly infected.
Due to repeated infection of the central line, the doctor at Piam Brown Ward decided to remove his first central line, and inserted a new one.
My son was looked after by the multidisciplinary teams from Southampton to Winchester, including oncologist, ophthalmologist, surgeons, orthopedics, clinical nurse specialists, and community nurses.
I believe that the oncologist and the medical team at Southampton General Hospital want to help every single sick child being sent to them. I trust that they want to do the best, so they have stringent rules and they follow proper medical protocol.
In my son’s treatment and 10 years’ follow-up, we were treated with the utmost respect, and we felt that we were listened to each time.
Hospital’s statement relating to Ashya King
Yesterday I read a statement issued by the University Hospital Southampton NHS Foundation Trust: Latest statement in relation to Ashya King, 2 September 2014, I found the details below revealed why the doctors were concerned about the disappearance of Ashya and why they wanted Ashya to be found urgently to receive immediate treatment, as they failed to establish communication with Ashya’s parents – who may have been on the ferry to France.
“On 28 August 2014, during unsupervised leave on the Trust’s grounds, Ashya’s family chose to remove him without informing or seeking the consent of medical staff.
The Trust was concerned for Ashya’s safety for the following reasons:
Ashya was dependent on a nasogastric tube for food and his parents are not trained to use it
Although the food pump had been removed with Ashya, the power cord had been left behind on the ward. The feed pump does have a battery but it is only for occasional use.
If a nasogastric tube became displaced either accidentally or through vomiting there was a possibility that feed could enter the lungs with potentially fatal consequences.
Ashya has no gag reflex and the family are not trained to deal with the (potentially serious) complications of choking
Ashya developed a temperature the previous day and there were concerns that he may develop an infection
Ashya needed to start his chemotherapy within the week to ensure the best chances of complete recovery
The Trust contacted the police, in line with Trust policy, to alert them to the situation.
The Trust will offer any assistance that it can to ensure that Ashya receives urgent treatment at an appropriate hospital.
Posted on Tuesday 2 September 2014 ”
By The University Hospital Southampton NHS Foundation Trust: Latest statement in relation to Ashya King, 2 September 2014
The story of Ashya King is the most heartbreaking. Everybody wishes that Ashya will get the best possible treatment, whether or not it is proton beam therapy, which his parents have wished.
I hope one day we’ll get the full story of what exactly happened between Ashya’s family and the doctors from Southampton General Hospital. I read in this report in the Guardian that Ashya King’s tragic tale is hard to understand amid hospital silence.
“The doctors treating the five-year-old at Southampton hospital have been named and publicly accused by Ashya’s father, Brett King, in a video now on YouTube, but they have said nothing.”
“As they are bound to silence by patient confidentiality rules, they have not revealed anything about Ashya’s condition, their recommendations for his treatment, the prognosis or why the police were brought in to bring him back when his parents crossed the Channel with him in a wheelchair. Everyone’s actions have led to the shocking outcome of a small child ending up in hospital in a strange country deprived of his mother and father, who have been arrested.”
By Sarah Boseley from The Guardian.
An inspiring, empowering oncologist
Two oncologists were named and publicly accused by Ashya’s father in his video. One of the oncologists named was Dr Ramya, who saw Ben in the Long term Follow-up clinic and later discharged him. Dr Ramya was an approachable professional. She informed us of the research of the illness, she explained facts clearly, and more importantly, she spoke to my son directly. She challenged him to understand his own illness, and empowered him to understand the symptoms, manage his lifestyle, and understand late effects from the treatment. Her message to us was empowering. I respect her for her expertise and her role as an inspiring teacher and doctor.
Expertise and empathy from Southampton General Hospital
I write this post to try to inform you of an aspect of life in the children cancer ward at Southampton. We’re emotionally attached to the ward and medically we have benefited from the high level of expertise, immense empathy and care from the nurses and doctors of Piam Brown Ward at Southampton General Hospital. It saddens me to see that the image of the hospital, and the dedicated children cancer medical team at Southampton is being tarnished, while the ward or the hospital is not yet able to explain itself due to the complexity of the situation.
We are in danger of turning Ashya King’s story into a pure emotive event. We are in danger of damaging the morale of the NHS medical team, whose aim is to save lives. I hope Ashya King receives the best treatment blessed by a strong medical team. I also hope that we keep faith with the NHS, our doctors, nurses, and countless medical staff, whose dedication and expertise save lives, and keep the NHS our national treasure.
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Good to see some balanced opinion on this story. I think that much of what we have got from the media has been misinformed, sensationalist and, frankly, largely unnecessary.
For example, the worry about the batteries in the feeder. As the parents had obviously planned this, isn’t it quite likely that they would have found an electrical lead? From what I recall, the electrical socket on the machine is a fairly standard kettle or computer fitting, so probably not too difficult to source. I thought that the fact that the food would run out should have been a far more pressing concern.
As you suggest in your article, it is traumatic enough to have a hospitalising condition and the need to stay in hospital for any length of time for young children is difficult for all concerned.
At Eastleigh Lions Club (now in our 50th year of service to the local community) we recognised this several years ago and prepared and supplied “Bravery” certificates, which can be handed to all children who have to be hospitalised. A couple of years ago we had another batch printed and delivered them to the hospital as the staff say “although it may only be a piece of paper, it does help the youngster’s recovery to be “certified Brave” when that is exactly what they have had to be while being treated.”
Thank you Dave for sharing with us the Bravery Certificates by Eastleigh Lions Club.
Yes we have kept quite a few of such certificates. I’ve explained more about them in my new post: Eastleigh Lions: Bravery Certificates.
Thank you Dave very much and thanks to all Lions. Keep up your good work!