A word in your ear…

I wrote this post a little while ago when I was in a particularly bad mood. It doesn’t represent how I feel all the time, but does illustrate the range of emotions we go through on a daily basis. We live in a blame culture and I often battle the urge to find someone to blame for Eleri’s illness. When I am rational, I know that there is no one person, place or thing to blame for her diagnosis. It is a cruel and unfair stroke of fate that no one could have predicted. That said, I have decided to post it to show that there are days when everyone needs someone to intervene and take the load. There are moments when, as hard as it it to keep it together and stay strong, the anger engulfs you. There are times when even the strongest among us need someone to say ‘it will be ok’ or ‘don’t worry I can do that for you’ or ‘there is nothing you can do, you are doing your best’. Words of comfort and acts of kindness cost nothing and mean everything to the person who could do with a little extra help. These lines below are an example of a time when I was struggling to deal with the unjustness of our battle and craved a outlet. Please read it with that in mind…

Anyone that has met me will know that I like a good rant. I have tried to refrain from ranting in my blog posts because I have wanted to keep it about our experiences, emotions and feelings. However, I’m having a bad day and I feel like I need to vent. I’m annoyed. I’m hacked off. I’m raging. The anger that I have been keeping under control, feels like it’s about to seep out of every pore in my skin. I want to bloody well rant.

Primary bone cancer is really rare. It’s even more rare in someone of Eleri’s age. When she was complaining of pain, I would never have come to the conclusion that she had cancer. It would never have occurred to me, just as it wouldn’t for any other parent. It’s not something that your consciousness allows you to consider; the horror is simply too much. However, maybe it should have been something that the medics thought of. Once cancer had been mentioned to me, I googled Eleri’s symptoms and there was no doubt in my mind what we were dealing with. On each occasion that we visited the doctor I had talked about the symptoms. I had communicated that she was waking in the night complaining of pain, that the pain came and went, that she was tired, that her behaviour was difficult but the dots were never joined. I’m not saying that they weren’t doing their job properly or that they were negligent, I’m mearly trying to illustrate the lack of knowledge and understanding of childhood cancer and, in Eleri’s case, osteosarcoma. All the parents on the ward have stories of how their child was poorly for weeks, months, sometimes even years and they took them to the doctors only to be told that they had a virus or in our case, a sports injury. I understand that most children might have a virus and that is the most likely solution for some, but not for all.

I consider myself to be a reasoned mother. I have never taken my children to the doctor unless I absolutely have to. However, I always feel like I am wasting the GP’s time or that I am an overprotective parent. Not only this, but that children tend to exaggerate illness or pain. I think this attitude is key here. People don’t always listen closely to the parents or, more importantly, the child. They don’t always believe that it’s as bad as it may seem – it’s easier to believe that a parent is panicking or a child is being dramatic. I am guilty of playing things down, I don’t want to be seen as a neurotic mother and I had my reservations about Eleri’s pain. However, with all the symptoms I and Eleri were describing, I feel alarm bells should have been ringing sooner. They should have seen beyond what I was telling them and realised how poorly she was. Above all that, they should have listened to Eleri.

Eleri has had input from physiotherapy since her diagnosis. One physiotherapist told me that if she was complaining of any pain believe her because children don’t really complain about pain – if they are, it’s probably significant. If she knew this, why didn’t other people in the medical profession? Why when I said ‘I’m not sure if there is anything wrong’ didn’t they stop me and correct me?

Everything I have read since Eleri’s diagnosis has said pain that comes at night and is intermittent, is not normal and is concerning. Why wasn’t this picked up when I was telling the GP’s? It’s the most likely and obvious sign of primary bone cancer. The answer seems obvious, knowledge and awareness of the symptoms associated with primary bone cancer and any other childhood cancer. I know they are rare, but that excuse just doesn’t seem to be cutting it with me today. I may be more reasonable tomorrow, but today I just find it irritating. It might be rare for us muggles to have little or no knowledge of the symptoms of primary bone cancer in children, but is it ok for our medical professionals not to know? The further along this road we travel, the more I’m starting to think that it really isn’t. Our GP’s are the frontline of the NHS and they should be better equipped to pick up on these diseases quickly. Early diagnosis is key and so important in saving lives. I have yet to meet a member of the NHS staff that doesn’t want to do the best for their patients. They work tirelessly to provide a world class service for everyone in, what I believe, very difficult circumstances. They are all underpaid and over worked, with budgets that are too small. When we were on HDU we met a nurse that had been working for nine days straight because they didn’t have enough staff! How can a GP truly listen and get to the bottom of a patient’s problem when appointments are too short and rushed? How can they pick up on rare conditions when they don’t seem to have time to look at the patient more closely? How can ‘early diagnosis’ be made when we have to sit for a GP appointment, then an X-Ray and then weeks for a physiotherapy appointment? How can they understand the real picture?

We need to invest in our services and the people that are devoting their lives to the help and protection of others. We need to give GPs the time to get the know their patients and give them time to specialise in certain areas (I’m sure they already do, but what harm can more time and training do?). I don’t agree with the America’s healthcare system and I am certainly not advocating it, but at least they have first line access to specialists. Would Eleri’s problems have been spotted by a paediatrician? If we didn’t have to wait so long for a physiotherapy appointment, perhaps we would have been seen earlier by people with experience of children with pain. Maybe they would have realised that it’s wasn’t a normal sporting injury. For me the answer is simple, invest in the NHS. Pay more taxes. Make sure there is money for education and raising awareness of childhood cancer.

The politicians need to stop thinking of themselves and their party politics and think of the people they are supposed to be representing. Only 4% of government funding spent on paediatric cancer. 11 new families a day are dragged into the world of childhood cancer and the reality is that 3 of those families will lose their battle. Not only that, if you take childhood leukaemia out of the statistics the 5 year survival rate for paediatric cancer is only 50%. How in a modern first world country is this acceptable? Yes, there have been recent announcements of investment in the NHS, but I and most of the NHS staff I have spoken to are doubtful that this money will reach the places it is really needed. It won’t go on frontline services and patient care, it will be swallowed up by bureaucracy and previous poorly made financial decisions.

Another target for me today is Cancer Research Uk. We have all seen the emotionally charged advertising and fundraising campaigns that feature children and young adults with cancer. I, like everyone else, assumed that the money raised by these campaigns is used for research into childhood cancer. This is absolutely not so. Only 1.4% of their funding is used for childhood cancer research, but children are used in over 40% of their advertising. This is unacceptable and misleading. It harks to the moral compass of the executive board in the decisions they make. It’s ok to use the pictures and stories of childhood cancer, but not fund the research to help stop it?

As a society we need to start demanding better care and attention for our children. What sort of future do we have if we don’t?

2 thoughts on “A word in your ear…

  1. I know it’s primarily a rant but there is much truth here. The almost cynical use of children in many charities is a subject of parody and core source material for more than one stand-up routine which can undermine and promote cynicism (I’m not knocking the comedians but the ads).
    The way we organise NHS spending also needs constant, honest scrutiny but the debate gets hyjacked. We have the most efficient health service in the world and spend less on bureaucracy than almost anywhere but we also spend less of our GDP on health care than most. So politicians and the media encourage excuses and targets to divert the risk they get blamed for the underinvestment.
    One of the worst things about the underinvestment is no price or value is put on time and reflection. Doctors don’t have time to keep up with research. Surguries aren’t organised with access to specialists because this may involve fewer bigger practices and people fear they’d have less overall access because some daft politician would try and use this reorganisation to cut costs…and so no one has the time to listen to patients.
    It is similar in truth across the whole publuc sector but we see the human cost most obviously in health…that’s not blaming anyone because ultimately as voters and taxpayers we could all demand and get better if we got organised, but it is ok to make these points and have a rant because they contain truths. Because health is especially emotional we also don’t want to be seen to blame the saints and miracle workers caring for our loved ones but there has to be space and room for honest reflection.


    1. I have been saying to Bethan since we started our journey with Eleri within what you, to quote “We have the most efficient health service in the world” that there are insurmountable areas that can be improved, which would definitely have a positive impact on the NHS.
      Currently, even though for obvious reasons I have not been in work, I operate as a Continuous Improvement (CI) Practitioner/Facilitator (In old money LEAN) within the RAF. My main focus is to, via invitation by the customer, not to come up with the answers but to play devils advocate. It is a case of drawing the answers from the customer which can be used to improve the issue(s) that they currently are experiencing. Their problem is defined, metrics are decided to measure, these results are analysed, improvements are put in place and said improvements are controlled and where required through sustainment meetings small changes can be made to further improve or change dependant on any current environmental changes that may occur. An additional role is to use my expertise to deliver basic CI awareness training to personnel, in order to embed a CI culture so that they can notice improvement opportunities within their own area of responsibility (AOR).
      In our time within the NHS bubble I have noticed and discussed with staff multiple areas that I feel could be improved from IT systems, recycling, ordering of medications to the fact that they do not even know what continuous improvement is. If lots of small 1% improvements are made in these areas it would have a huge impact on man-hour savings, finance and practitioner to patient time not mentioning the whole plethora of other gains from being more organised, efficient and streamlined.
      There are CI Practitioner/Facilitators within the NHS, I know this because I have met a few of them, whether or not there are enough of them is definitely a question that needs to be answered. I understand that the NHS is a huge organisation and is the biggest employer in the UK, what I don’t understand is why the trusts do not work closer and educate/promote/practise CI ways of working more as it is a proven model to achieve results.


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