Tag Archives: battle

Battle of Hastings, 1066 (the 2015 version)

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“I can’t wait to tell my class that I was chased by a hawk this weekend when I see them on Monday!”

As you might imagine, with that opening gambit, I couldn’t wait to get home from work to find out exactly how M’s classmates responded to the unusual piece of news that he was determined to share today. I suggested that he might want to explain a little more about our weekend adventures rather than just announcing this out-of-the-ordinary occurrence to the world, but knowing M as I do, I fear the finer details might be missing first time round.

20151010_165603Despite suggestions to the contrary, our weekend was, in fact, spent in East Sussex and more specifically, in Battle at the site of the Battle of Hastings. G has been studying the events of 1066 in her History lessons this term and has shown a real interest in learning about the central characters of this Battle. I have a vivid memory of visiting the battlefield with my parents when I was about the same age as G is now and wanted to be able to create a similar experience for both G and M if I could. What better was to learn more about history than by visiting where it actually happened? I started investigating the Hastings area and was delighted to see that last weekend was staging a re-enactment of the Battle of Hastings in advance of the 949th anniversary of the event itself.

20151010_123132Much to my astonishment, we had a weekend free of any other plans, a rare thing indeed in our household and so we planned for a short East Sussex break, where the Battle of Hastings would be brought to life outside of the classroom and hopefully would become even more real in G’s memory. As always when planning a trip with M, I spent most of Friday rushing around from pillar to post in a mad dash attempt to make sure we had packed everything we could conceivably need during our 2 nights away from home. A slight lapse on my part meant that 3 hours were unexpectedly lost to a forgotten hospital appointment for me and another 40 minutes to training up the new school secretary on how to operate M’s pump, but we got there in the end and as soon as school and Stagecoach were finished, we started our pilgrimage to Battle.

20151010_155222We arrived at Battle Abbey slightly ahead of schedule on Saturday morning and I am so glad we got there when we did. A great tip from one of Mike’s work colleagues meant that we had gone prepared with a couple of folding chairs amongst our possessions and we nabbed ourselves front row seats for the rest of the day. We explored the Saxon and Norman camps set up either side of the main arena, treated ourselves to a few trinkets, drinks and snacks and decided which events we wanted to see. We actually didn’t really venture too far away from the main arena itself as the children were fascinated by all that we could see and experience there. Mike was thrilled to be picked to be part of the first Falconry display and remarked on how surprisingly light the bird was as it landed on his arm. 20151010_155237The children were enthralled by the impressive weaponry display, which showed the different types of weapons that would have been used by the cavalry and infantrymen of both armies and treated us, in our front row seats, to a frighteningly realistic charge by the opposing sides.  For many, the highlight of the day had to be the battle itself, which was acted out in front of us with a mix of live and recorded commentary to talk through and explain the events as they unfolded. I was impressed with G’s understanding of the tactics employed by Duke William’s army and she was able to hold her own afterwards when in discussion with 2 of the men involved in the re-enactment. It was a fantastic day out, the children now both have a greater understanding of this significant historical event and Mike broadened his knowledge of his adopted homeland too!

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Oh yes, and M was chased by a hawk, just as he said. Following his in-depth conversation with the Falconry team during the day, they chose him to be part of the second display and gave him the job of dragging the decoy across the field at speed to show how fast and effective the Harris hawk is when it comes to hunting its prey.

 

Round Two: the Pellet study and other adventures

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Courtesy of 123opendata.com

Courtesy of 123opendata.com

Once the NG-tube was finally in place, M and I then had 5 long days to survive the copious amounts of Klean-prep, senna and picolax that were pumped into his system to clear his troublesome bowel.  Although we appeared to be off to a slow start, these powerful laxatives finally did their job and by late Monday afternoon, the gastro registrar was confident that we were ready to start the pellet study and a x-ray confirmed his opinion.  I had already met with one of the gastro investigation nurses, so knew that the 3 pellets, containing different shaped plastic markers, were ready and waiting on the ward for M and all we needed to work out was how best to get him to swallow them.

Over the last year, we have made huge strides in getting M to swallow tablets whole and no longer need a spoonful of Grandma’s jam to help the medicine go down as he has conquered his struggles and now merrily swallows them with just a mouthful of water to help.  However, there were 2 problems we now had to overcome:  M’s new-found fear of swallowing capsules with the NG-tube in place and the fact that these pellets are of a size that even I would struggle to take easily, let alone a small child.  The nurse suggested we resorted to mixing the markers into a couple of spoonfuls of jam and that was our first attempt.  For reasons that will remain forever unclear, M found even this method difficult to manage and instead resorted to swallowing the pellets one tiny marker at a time.  It may have taken considerably longer than anyone expected, but the pellets were taken and so round 2 of our admission was well underway.

The week should have been an easy one, as it was supposed to require nothing more of us than completing the pellet study, but unfortunately it was at this point that I had to brace myself and find the strength to weather an unexpected and turbulent storm.  Despite both Mike and I having repeatedly made clear that we have almost no support from our local hospital and their paediatric gastro team, this information appeared to have got lost along the way and I found myself embroiled in a battle to keep M in hospital once the pellet study had started.  GOSH felt sure that we would receive all the care and advice we would need from our local and nothing I said would convince them otherwise. battle I spent more hours than I care to remember fighting M’s corner and insisting that the consultants didn’t discharge him before the study was complete and the NG feeding started.  The pressure was huge, both on me – as I talked, discussed and cried my way through numerous meetings with nurses, doctors, dietitians, psychologists, PALs workers and indeed anyone else who would listen – and on Mike – as he sought to juggle the challenges of working, looking after G at home and supporting M and me whilst we were several hours away and only contactable by phone.

It quickly became evident that GOSH simply could not conceive that we could be as lacking local support as I was asserting we were and I have no doubt that they were beginning to view me as something of an overwrought, overtired, over-emotional and somewhat neurotic mother, who was unbelievably arguing to keep her child in hospital, when most other parents were trying desperately to get their children discharged before Christmas.  By the end of the week, it had all come to a head and I was at my wits’ end, but was finally vindicated late Friday afternoon, when our local dietetics team refused in no uncertain terms to take on M on a shared care basis with the GOSH dietitians – an entirely new experience for GOSH, though sadly an all too familiar one for us.

lighttunnelDespite all the heartache and distress this unnecessary battling caused, there was some really positive light at the end of the transit study tunnel.  The final x-ray on Friday indicated that M’s bowel is working more or less as it should.  It may be a little slower than ideal, but the markers had moved through M’s system and the consultant was delighted with this result, which means that the bowel is currently doing its job.  We really couldn’t ask for anything more.  So, the conclusion drawn is that it is the complex and multiple food allergies that have been causing M’s diarrhoea and other symptoms because of his underlying condition, EGID and the final step is to identify these as accurately as possible.

The Battle is won

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battleThis has been a surprisingly difficult post to write.  I’ve found it challenging to give the details of our progress over the last 4 months following my formal complaint to our local hospital about the poor treatment we received when we were there earlier in the year, without it sounding either overly clinical or emotional beyond belief.  I’ve finally resorted to bullet-point format as the steps we’ve taken have been an important part of our journey with M that I want to share, but they don’t need any unnecessary waffle in the re-telling.

  • 24-Feb-2014: Write a formal letter of complaint to the Patient Advice and Liaison Service (PALS) based at our local hospital, giving details of our appointment, what happened whilst we were there and our areas of concern regarding the care they’re refusing to offer to M.
  • Mar-2014: I also write to our local MP asking for his help in getting local hospital support for M and giving brief details of our poor experiences to date, including a copy of our formal complaint and my blog-posts, so that he has all the relevant facts to hand.
  • Mar-2014: Receive an acknowledgement of my complaint from the hospital, who advise they are looking into the matter and will send a formal response by the end of April 2014.
  • Mar-2014: Our MP’s secretary calls from Westminster to express their dismay at learning about our experience and to offer an appointment at his next local surgery to discuss the matter further and to see how he can usefully support us in our quest to get local input for M.
  • Mar-2014: Receive a copy letter from the General Paediatrician we saw in February giving details of the appointment and what next steps they suggest are followed to help M.  Given the date of the letter and the way it is written, it is blatantly obvious that it has been written with my complaint in mind and does little to reassure me that this medic will be fighting M’s corner going forward.  The letter stresses that they are concerned about our request for shared care, but that they will refer M to one of the gastro consultants based at our local hospital to see if he will help.
  • Mar-2014: Same day that we receive the letter from the last doctor, I meet with our MP to seek his advice.  He listens with a sympathetic ear and immediately offers to do whatever necessary to ensure M is given the chance to receive local support as well as the care from GOSH.  In the light of the letter received, he proposes that we wait to see what the formal response from the local hospital is and whether the referral is successful or not. He also asks that I keep in touch with his secretary and let her know how things progress.
  • April-2014: A month passes without much movement on either the complaint or the referral front.  I contact our GP to ask him to also refer M to the gastro consultant as I am still lacking confidence that the hospital doctor will do a favourable referral given the nature of my complaint.  During this wait, we have a planned appointment at GOSH and I am able to discuss with them whether they would support our request for shared care. The gastro team is very supportive of our request and advises that they usually recommend that a general paediatrician is the point of contact locally to avoid any unnecessary conflicts concerning M’s treatment.  However, given our local’s apparent reluctance, GOSH agree they will discuss M’s care with anyone in the local hospital.
  • April-2014: We finally receive a reply from the Chief Exec, offering his apologies for our poor experience as well as giving me their findings about the complaint.  He also offers a meeting with both the gastro consultant and a member of the Senior management team at the hospital to see how we can take M’s care forward.  There is some confusion as to who will schedule this appointment, but a series of phone-calls on my part and a very helpful admin assistant at their end means that the appointment is finally organised for June.
  • May-2014: I receive a follow-up email from our MP asking how things are going and reminding me to keep him informed of any changes in our situation.  I’m delighted to be able to inform him that we’ll be meeting our local hospital at the beginning of June and agree to let him know how that meeting goes.
  • June-2014: The day finally arrives and Mike and I head off to our local hospital to meet with members of staff to discuss M’s needs, having left a poorly M with Mum for the duration.  Our aim is to get our local to agree to having “shared care” with GOSH, so that we don’t have a repeat episode of our Christmas hell with a M who desperately needed admitting for treatment and nowhere that would take him.  The consultant we meet is delightful and we’re thrilled to learn he worked at GOSH for a number of years and, even better, has worked alongside M’s consultant there.  He instantly agrees to look after M on a secondary care basis, dealing with our existing issues with recurring constipation/impaction and any emergency situations which may arise.  The management team has no choice but to go along with his suggestions and we agree on a system that should work well for us all and will ensure that M gets the very best care at all times.  The meeting ends with a follow-up appointment with the consultant 5 days later to deal with the current bout of impaction that M is suffering.

champagneIt has not been an easy road to follow and the number of letters, emails, phone-calls and late night discussions that have been flying around is huge – BUT we did it.  We’ve got secondary care for M at a local level and a positive way forward for the next few years, which is everything we wanted and which I hadn’t dared to believe was possible.  Of course, we still need to see how it all works outs in practice, but the first signs seem positive and we know we’ve got at least one consultant on our, and M’s side.