Saturday, 9 June 2012

Sat 9 th June. Harry has dipped

Well we were very positive at the beginning of the week, that Harry's stay may be shorter than expected. We felt very positive and his blood scores were going up, apart from his platelet level, though that one was expected to stay low for some time. We also knew despite the good counts, Harry was still susceptible to infection, but even the consultant was impressed with Harry's progress so that made us feel good. However, Harry is not so good today. his neutrophils have dipped and so have his other blood scores. he has had his 5 th platelet transfusion and first haemaglobin transfusion of the week today. He has also spiked a temperature at various times today and so he is back on both his intravenous antibiotics. they had taken him off one of them. Harry has also been struggling to pass urine and so has been given a diuretic to help him wee more. Weeing is very important as he has fluid pumped into his body and so he needs to excrete a certain amount to ensure that fluid is not building up in his body. Harry when weighed today had put on a kg, which meant that he is storing fluid. his body is beginning to look puffy! Therefore he is having a liver scan tomorrow, so they can assess if there are any problems in this area. chemotherapy can cause liver functioning problems. We had hoped Harry had avoided any of this and it may all be speculation too at this moment in time. it could be that the diuretics do the trick and he starts passing enough urine again. Liver functioning problems can be short term and reversible. We await the scan results, but more importantly Harry's consultant's take on them too. So that's Harry's imminent health situation up to date. My rant at present is about service provision! Some are bored already from some posts I put on Face Book, however, I will just briefly discuss why I am disgruntled! Back in March, health talked about having a multi disciplinary meeting to get all service providers around a table to discuss a package of care for Harry. I hear nothing, so ask my McMillan nurse to get onto it. I gather at another meeting that health, by that I mean the community nursing team, have some services on offer to be arranged when Harry comes out of this big stay in hospital. My social worker closed my case in March as she was leaving and we had no social service provision, so seemed no reason to keep it open. However, from my discussion this week with the community nursing team, it transpires that they thought that social services was responsible for arranging this multi disciplinary meeting, but the worker left and closed my case! So no meeting and as it transpires from a few phone calls to health, 3 hours a week respite is all that is on offer. Possible adding another 5 when another contract is secured, but probably a couple of months down the line. So I scoff at 3 hours! Whoopi Do, I should be dancing in the street! I am honoured! I think not. I should outline why I need services. Harry's immunity will be low till mid or maybe the end of August and so he cannot go to nursery. Therefore I want services to provide stimulation to Harry, particularly in the crucial month of August before he starts school. This I am sure they will throw at me is technically the summer holiday in terms of the academic world, but considering Harry has only attended nursery for a handful of days this year, I think it should be about need. I also want to get back to work for a few hours each week. I was hoping for more care provision to enable me to get back to work a bit. It annoys me that nobody ever looks at the big picture. I have been told by my McMillan nurse that many parents give up work during this stressful time. It is true that I have felt too involved with Harry's care to be able to work and function as I should. However, there is also something about trying to work and refocus on something else that is not Harry to keep my mental health, well healthy. It is easy to obsess about lots of things and because my life feels on hold, to get distracted by the fun others have etc. etc. Also to continue to work, means I continue to be a tax payer and thus making the economy go round. Via working I am paying into a pension, ok may end up worthless, but I am a contributing member of society. Therefore to provide some services, which will be needed only short term, to me makes sense. But then when did anything sensible happen! I am only suggesting I work half my hours if possible, maybe 12 to start with, so 1 1/2 days respite is required. Well following further phone calls, if it all works out Harry will be allocated a CLIC Sargent volunteer on a fRiday. Not sure what hours, but hopefully enough to enable me to work. So from my hard work of ringing about 5 different services last Wednesday and using my valuable hour of respite on the ward, when a Candleligheter worker played with Harry, I may have an adequate package of care. but I should not have to be co-ordinating my own package of care. In adult service where I work, I feel that, as a social worker that is one of our key responsibilities, is to co-ordinate a package of care in conjunction with a multi disciplinary team. our role is to ensure all services come together and meet the service users needs. of course cuts in services limit what you can provide, but good communication skills enable this to be well, communicated! I also have Janey our volunteer play worker who I know will also help out. I was put in contact with Janey via education Leeds, when I was ranting about Harry not accessing the 15 hours a week that every 3 and a bit child is entitled to! So being persistent does work. as you can see if still reading, that the majority of the care package will be from voluntary services. So Mr David Camron you can see that The big society you talk about does exist! There is one subject I would like to touch upon too before I sign off. That is the fact that I never asked the medical profession to intervene in the way they have. It has just happened. Yes I have had to sign consent forms for this and that test, so no I have not just been a bystander. However, had medical intervention not occurred last November, Harry would be dead. So I am very pleased he is still here, medical intervention has provided Harry with the hope of a life, but currently due to medical intervention he cannot do the things his peers do. If cancer had not occured, I would be working 3 days a week and Harry would be in nursery for those days. Due to medical intervention then Harry is not medically fit enough to attend nursery and this has a knock on effect for me being able to work. I feel just as medical intervention has taken place, so should the services be available at the main focal points whereby Harry is not fit enough to attend nursery. It all brings back thoughts I had following a documentary I watched regarding the ethics around saving babies born at 24 weeks. Medical intervention meant these babies had some hope of survival. A large percentage despite the intervention did not make it and out of the ones that did, many had lifelong disabilities. Now I am not saying don't save these babies, but it was evident that for the ones that lived and had the disabilities that once the child in particular reached 18, then there was not the service provision to provide these people, with the quality of life that they deserve. I guess what i am saying is that medical intervention saves lives, but the lives after the intervention are not always ones that can fit into mainstream services and so health and social care should meet this need. It is not right to save a life, then not have adequate service provision to maximise that persons quality of life! I guess have you really saved a life if that person cannot get adequate services to try and live the life they want to and feels oppressed and on the fringe of society due to their disability! It's when lack of services mean a person is disadvantaged from their peers and this then causes depression etc and huge carer stress, as frequently family have to continue their caring role, often for the rest of their lives.

1 comment:

  1. By the way it made me feel better writing this stuff even if I lost the reader half way through! You have to remember on an evening at home or hospital there is nobody to sound off to as the other half is caring for our other boy!