Dear Jane.........

This post has been sitting in edit mode on my laptop for a few weeks now, waiting for me to tweak it and post it, I find myself sitting in a tiny room in the parent's accomodation wing at 3.55am in the morning, unable to sleep yet again and now I find time to finish this post and update.....sorry for the odd timeline but it's just impossible to write during the day with Daisy, I am either spending time with her or talking to the various doctors and professionals who stream into and out of our lives over the week.  Weekends are for family visits, and night-time is for mulling over what has happened during the day or swapping shifts with Andy................

A week is a long time in the world I find myself inhabiting, and just one week on from my last post it feels like we have moved forward at nano-speed in all areas of our life. I came home for the evening on 5 April and Andy was staying at Great Ormond Street.  At 5.30pm he phoned me to say that one of the Gastro Consultants had come to see him to say that Daisy would not be able to have a slot for the surgery to place a surgical jejenostomy until some time during May.  This was going to condemn her to at least another four weeks in her cubicle, attached to intravenous pain relief, with no feed and TPN running for 24 hours a day....clearly this was not acceptable, what had gone so wrong that we found ourselves in a situation where our childs needs were no longer seen as urgent....

Andy came home on the last tube and we fired up the laptop, opened a bottle of wine and began to write:-

Dear Jane Collins (the Chief Executive of Great Ormond Street Hospital) ...We are writing to register our formal complaint that regrettably after a generally positive  6+ year relationship with Great Ormond Street Hospital we feel that our daughter, Daisy’s care and clinical management is substandard and not supporting the objective of improving the quality of her life...

We described, over the following four pages, the impact of not having a surgical jejenostomy was having on her life and our family life.  How basic processes in communication and patient advocacy had left us in a situation where our family would continue to sit waiting for things to happen for at least another four weeks....four weeks where Daisy was condemned to life on TPN for 24 hours a day and at constant risk of developing infections.

Within 12 hours our world changed, people we had never met before appeared in Daisy's room and most importantly the surgeon who had performed her ileostomy last year appeared in her room to tell us that she had been put on the emergency list for surgery the next day.... by Thursday evening Daisy had her surgical jejenostomy, technically called a roux en y jejenostomy and although she was not coping too well with her breathing post anaesthetic was back on the ward and we could start to think about life away from hospital again...


We are now 2 weeks post surgery and Andy and I have mulled over why did it take a letter to be the catalyst to action.  We are so fortunate to be able to articulate our concerns and to be able to stand back and use our experience as business professionals to look objectively at why processes had failed to support the overall objective of the child first and always.  We have never ever criticised Great Ormond Street Hospital and never will - our daughter owes her life to the care and expertise of the many people we come across every time we come to this hospital.  However some of the basics of communication and ownership of issues are so clearly missing in some areas leading to situations where children wait for procedures and plans to happen.  What was missing in Daisy's case was a clear sense of ownership of the problem and that word which we have used so much recently, advocacy, for her needs.  As her parents we trust that people are fighting her corner when she needs things to happen, in many cases this does happen and we know of some brilliant people who are constantly fighting Daisy's corner. But when your child is so complex and teams rotate on a weekly basis who is making sure that things are still happening when they should?


Our letter of complaint has become a catalyst for a root/cause/analysis of this situation - parents of complex children need to be parents, we are advocates too but we trust that the health professionals are then making sure that they are representing our child's needs among all the other priority children.  Andy and I did not want our complaint to be just about dealing with our situation, we wanted it to change things for the better, to look at where things have gone wrong and make a difference so that situations like ours don't happen. 


We now have over six years of experience of dealing with the machine that is the NHS, over the years our ability to deal with this has grown and evolved.  We have learned that we are essentially dealing with a huge, supertanker set in it's ways, but we have also learned that by finding the right people who can help you can slowly find a voice which people will listen too.  Whenever people ask me how to manage a situation I always direct them to the Patient Advice and Liaison Service (Pals) - every trust has one.  We have a long relationship with the Pals team at GOSH, to the point that we always pop our heads around the door, even to say that things are going well this stay.  Often I will go in and ask them to "liaise on our behalf" - sometimes a carefully worded email from Pals on our behalf is all it takes.  The Pals team know our situation with Daisy and know us, we have only ever used them when things are becoming difficult and are always clear in knowing what we want as an outcome. 


We know we are going to continue to have a long relationship with GOS, many things have changed for the better - the care Daisy receives on Rainforest ward is fantastic, so much better than the early days when we used to come to the hospital, things can improve and we have always taken the view in every aspect of our lives that you can sit and rant about it or you can do something yourself to improve things.  Years of diplomacy and tact pay dividends when you become viewed as parents who have views worth listening to...


So now Daisy has her jejenostomy at last and we are working towards increasing her milk feeds and reducing her TPN down from 24 hours so that she has time off.  We are also making more and more progress in managing her pain and identifying where it is coming from.  For years both Andy and I have been concerned that her pain is not just from her colon but also from her bladder.  Eventually the gastro team organised urodynamics testing which has identified another source for her frequent infections and pain - Daisy's bladder does not empty properly, this means that there is always a residue of urine left in it, explaining the reason behind the frequent UTI's and probably also explaining why she experiences so much pain at night as her bladder fills, goes into spasm and because of the UTI's is chronically inflammed.  The solution is to help it to empty.  The team here would like her to have a vesicostomy, yet another stoma, this time in her bladder so that excess urine could drain into a nappy.  Andy and I have not made that mind shift yet for another big bit of surgery or also to condemn Daisy to a life of incontinence when most of the mobile children with Daisy's condition do not spend their lives wearing nappies.  The second option is to fit a supra-pubic catheter which would allow us to drain the excess urine from the bladder.  This involves another general anaesthetic, it's seen as a medium term solution and in the longer term she would need surgery to provide a more permanent solution to her problems with her bladder.


So at least we have a lot more answers on why Daisy gets so much pain - it is from several sources, the diversion colitis, her dysmotile small bowel and, not suprisingly, a neuropathic bladder.  So you would think that given she is now doing so well establishing her milk feed, reducing hours on TPN and we have a good protocol for pain management that surgery to fit the supra-pubic catheter would be prioritised and we could move forward in our plan to transition from GOS to our hospice for respite before going home....


Well in a remarkable moment of deja vu I received a phone call from Andy tonight (it's always when I am at home and he is doing a shift at the hospital!) - at 5.50pm, the Urology Registrar came to visit Daisy to say that it would be likely that it would be a month before they could do the surgery......somehow I think we have been through this all before....however we have some good people who I will speak to tomorrow and once again in my role as Daisy's advocate point out that sitting in a hospital cubicle, at risk of infection (she is just recovering from a bout of shingles) while we wait for a procedure which will enable her to get home and live her life is not acceptable...


And so that is why I am finishing my blog in the early hours of the morning as I run through the conversations I will need to have yet again later today.  It's not my daughter's medical problems that cause me sleepless nights, these I can deal with, she is strong and a fighter....it's the fighting and battling I have to do on her behalf to get her the things she needs to live her life, that's what saps my strength and energy.


Better close down the laptop now, big day ahead, fingers crossed the next post will be a positive one!

My song for Daisy

This is my favourite song  and this video clip is from one of my favourite place - both the song and the place keep me going, the lyrics remind me why I do what I do....

Happy Mother's Day

Today was Mother's Day in the UK.  Did any of us think when we became mother's that the journey would take us to where we are now?  I never in a million years imagined that I would be sat, as I am now, in a tiny single bedroom in the heart of London, writing about my sick child, lying in a cot in one of the world's best children's hospitals next door....

I also never thought that I would have to find the time to attend meetings to discuss my eldest son and the impact his high funcionting autism is having on our lives and his life...

Do any of us really know what life has in store for us?  Out of everyone in my life I though my dad would live for ever, not cruelly snatched away by cancer at 61.  I thought I would be still building my marketing career, Andy probably thought he would still be an actor... If anything, life with Daisy has taught us that you have to accept what you have, live for the moment and go with the flow.  As I look around I wonder what is the perfect life, the perfect family? It strikes me that no-one has this rose-tinted existence, each person I come across has issues, problems, battles.... so while I enjoyed Mother's day today with one child still in hospital, one very stressed because she is in hospital, one about to hit adolescence and wanting her mum to be around more and one who is growing up far too quickly, I realised that I can crave the ideal family or embrace what I have  - and for the record I love every dysfunctional bit of my family, in my eyes - gene mutations, hormones, autism - everything - they are perfect  because they are individual and special and reflect Andy and I.  Anyone who knows us well know that life was never going to follow a conventional path  so I guess the adage "you are only given what you can handle" must hold true for us - although there are moments when I do think, OK, give us a break....

Which, inevitably brings me on to our wonderful youngest child, Daisy.  Tomorrow we enter week 7 of our current stay at Great Ormond Street, and where are we? - well since I last updated we have had an multi-disciplinary meeting, and I had the honour of being invited in for the last 30 minutes of it (the first 30 minutes were for health professionals only to discuss my child).  The agreement was that colectomy was deemed too risky but a surgical jejenostomy, although it would probably result in a step backward initially, would be OK.  It was also agreed that an MRI to rule out malignancy was a priority.  After much negotiating by the gastro team the MRI (under general anaesthetic)will happen tomorrow, although we still do not have a date for the surgical jejenostomy...

Of course, true to form, and probably knowing how important this MRI is tomorrow, Daisy has decided to spike a temperature and have problems with fluid balance and fast heart rate...the anaesthetist is going to love her!  I just hope it doesn't get cancelled, we need to know where this pain is coming from.  She has been on 24 hour TPN for over 5 weeks and a ketamine infusion for the same length of time.  This is no way to live. Everything has to be focused on getting her home, but getting her home  in a way that Andy and I can manage her.  We are hoping when she eventually does get the surgical jejenostomy we can get a good pain management regimen in place and go home via our wonderful hospice at Chase.  It is so long, once again, that we have been a family together, at least time at Chase will allow us time to adjust and be together before we go home.  In the meantime, I just need to focus on getting through tomorrow, I don't want the MRI to show anything nasty but at the same time we need to know why she is in such pain and why it is so localised and of course ontop of that I just hope she isn't brewing anything nasty which is going to affect whether she will even be anaesthetised..

Hey ho - life goes on, I will take it each day at a time, so in the meantime - Happy Mother's day xxx

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