Monday, 24 February 2014

Monday 24 th Feb

I haven't been able to write on this blog recently due to the amount of time I have spent trying to co-ordinate an adequate care package to support Harry at home.
I have given so much time to this fight and energy and in between trying to support Harry, Callum and managing home, oh and trying to be a wife, but failing really on that point, being a mother comes first for now. The trouble is due to the huge stress and emotional exhaustion we feel, relationships do suffer, who knows what will be left at the end of all of this, particularly as I am appalled at the shambollic end of life care provision that Leeds has, pretty much nil point. This thus contributes to our anxiety and exhaustion and intensifies our frustrations. Mine in particular being around the fact that I never asked anybody to treat Harry, but had the treatment protocol thrust upon us and my research says that Harry has had in excess of £600 000 spent on him. Now he is of no benefit to medical science, his care comes down to pounds and pence and 'The System', which makes no provision for 'end of life care'. There is no fast tracking process for assessments, decisions on service provision and then the actual delivery of services within social care. 
We had a meeting on 27 th January, whereby different professionals came together to look at our needs and service provision. What I hadn't realised is that social care have 45 days to complete an assessment, then it has to go to panel, which for us at present is the 11 th march. If approved then, we then have to await further for the co-ordination of their services and the eventual delivery of them. 4 weeks have passed now and we do not have the support in place that we need. Health, social care and education are so disjointed and unco-ordinated in Leeds, that you would think they operated on different planets far, far away in the abyss of space! I do not exaggerate.

We did end up in Martin house on Monday 10 th February  and stayed  there until Tuesday 18 th February.
We have some hours from continuing care nurses, but I have struggled to get these hours around the areas of most need, getting Harry up and then into bed. Also around Paul's shifts too. These hours are in a minimum of a 3 hour block, but usually around 4 hours, as you can work out, 20 hours does not provide a 7 day a week service. 
We have a few hours on a temporary basis from children and families team, we also have another worker that can provide 4 hours a week. However, I am spending so long working out who provides what hours, who can work when, when Paul is working, when he is around, then thinking about the fact that he is nearly back up to working full time, which means he could easily end up home late, as frequently used to happen and so I can't assume he'll be home at x time. Coupled with all of this Harry is very unpredictable, each day is different and it is also variable as to whether I have Callum to manage too! 
I need one provider of services and one co-ordinator. I have nurses coming in every 2 days to dressharry's  bed sores, now on his bottom and heels. We have a huge amount of equipment in place too, in fact we can hardly get into our bathroom now!
My head spins from all the phone calls I have had recently. 
I have finally contacted our MP with the support from friends whom have contacted him too, to try and highlight the lack of co -ordination and urgency put on the provision of adequate end of life care for children in Leeds.

I have high standards and principles I know. Our family support has become very limited as my parents have mobility issues at present. We have some fab friends who are very willing to help and I have utilised some of you. I know we have had offers of help from those we don't know too.
My biggest problem is having the time to utilise you all and have time to make contact and arrange initial meetings with those we don't know. 
As you can understand from above, my time is quite simply taken up with chasing the services we do have involved, to widen this and include all those people I don't know, for me at present is too much logistical planning, when I should be there for Harry! 
I am hoping my current plight will provide me with the services we need. To have one service provider and one contact would be wonderful. That is aiming too high, but it shouldn't be the case. 
One service, one vision, perhaps that should be a motto to developing a better journey for us carers, whom have the hardest job of all. 
As I said to a manager in health last week, it is a service led service around what works for the workers, it is not a needs led service around what works for a little boy whom is dying and is at the heart of this. I was told that it was a service led and needs led service!? I can't believe that in 2014 after all the serious case reviews re child protection and policy developments, that it feels progress is so very far away, there is a serious lack of communication, co-ordination and planning between departments, leaving us to pick the pieces up and try and create a jigsaw that meets our needs. We have too many pieces missing at present and I feel the system is failing their basic duty of care. 

I have been reading some information with regards end of life advise and good practice. 'Together for short lives' have a great information policy in their core care pathways information booklet.
It talks about parallel planning and here is their description of this: 

Parallel planning
It is often hard to predict what the future holds for children requiring palliative care. For some, periods of relatively good health are associated with the potential for an unpredictable, and potentially terminal event. For others, a period of deterioration may be observed, yet the child may have considerable time to live when the quality of their life should be maximised. Parents quickly experience the uncertainty that living with a child requiring palliative care brings, and with support, value a ‘parallel planning’ approach. Discussions with the child (where appropriate) and the family enable various options for care in response to a range of potential outcomes to be considered and written down in advance. Although children may be assessed as deteriorating or approaching the end of their life, it is sometimes the case that children survive these episodes. Parallel planning for life while also planning for deterioration or death allows a child’s full potential to be achieved and primes the mobilisation of services and professionals where necessary. Planning for the future at times of great uncertainty can also be comforting for children and parents. 

Whilst trying to plan for Harry's death, we also plan for his living too. By this I mean I would still like him to get into school. School have been great on being flexible about when he attends. Whilst having some hours from continuing care nurses, provided by health, I am very disappointed to hear that they can not follow Harry into school as this crosses over into an educational setting and they are not insured to work there! Education should provide their own nurses! Thus if this happened, there will be a duplication of services, a waste of resources and due to Harry's unpredictable health it is very hard to fix the hours of when he will attend. If a nurse visiting him at home for a 5 hour session could follow him into school for the 2 hours that he may be fit to attend, then his quality of life is maximised, resources are well utilised and not wasted. 

There is so much red tape and bureaucracy it is ridiculous. My son is dying, all I care about is maximising the life he has left and at the end of all of this feeling that his end of life care needs were well met. 
Watch this space, if I can't fight this now, I will continue to do so, so others have the service they deserve. 

Saturday, 8 February 2014

8th February 2014

Well Callum and daddy were able to join us last Saturday at Martin House. Paul and I got out for a cheeky drink Saturday night, result!
However, Sunday was a different set of cards and my dad wasn't well. We got a call from my mum whilst I was bathing Harry, to say dad had such intense pain in his leg that he couldn't walk and was passing out. 
Paul dashes home to help them and I insist they ring 999 when I spoke to them. Dad ended up in Lgi for the afternoon. Apparently he had an infection, but they had wondered if he had a blood clot. He was discharged home at tea time, with medicines to take.
Unfortunately, life seems to be throwing us some right duff cards at the mo and our idea of a day out never came off.
The boys had a ball though and really enjoyed their time at Martin House. It was a full on pirate weekend! The boys and the carers made a cardboard pirate ship, with flags, canons, sails and even beards!
The boys made donuts too!

On Monday Paul headed home early to let the plumber in, as has been planned for weeks. The plan is to have a new boiler and in the process move the new one to our new garage, freeing up valuable wall space in our old garage. This is in line with the grand plan to convert the old garage, which we have decided to push on with, since Harry is wheelchair bound. Maybe even to have an ensuite bathroom too.

Callum had lunch with us at Martin house, then is taken home by Kate and Callum's best buddy - Fin.

Since Callum had nursery Tuesday and Harry had an appt. at wheelchair services for 9 am Tuesday, it seemed best that Callum slept at home. Though Paul was working Monday eve and we had to switch plans from my parents  having Callum to stay to my in laws coming over! 
Logistical planning! Yes, my head spins!

Harry goes to school Tuesday after the wheelchair service appt. and he has a good day. Daddy and I have a furniture moving session! With the plumber in, floorboards need to be moved to provide access to pipes. This meant Harry's bedroom needed to be virtually emptied!
Also with Harry agreeing to have an electric bed and air mattress, he very generously agrees that Callum can have his cabin bed! Harry amazes me how he accepts things at times. 
With this in mind, we have decided to turn the spare room into Callum's room, with more room for his bed and toys.
However, whilst we await the delivery of the electric bed from health, Harry remains in his bed, but in the spare room. Furniture is stacked up, whilst Harry's room remains empty! 

We could have stayed at Martin House longer, but I wanted us to all be under one roof, so Harry and I left Martin House Wednesday before lunch. Harry wasn't happy about leaving at all, he said he wanted to live at Martin house! Before he left, he helped to put up a display of the photographs taken of the pirate fest!

Harry seemed to go down hill Wednesday. He only managed a couple of hours in school. He kept going hot and cold. He had a temperature, but perked up enough to go to beavers. He was being awarded a badge for courage shown for fighting this vile disease. In fact he was actually awarded a medal - the chief scout's commendation for meritorious conduct. A very high award! In fact harry can be awarded the medal at Windsor, to celebrate St George's day!   This would be a truly memorable occasion, but in my heart of hearts I don't think Harry will live that long.
Harry was overwhelmed at getting the award! We have talked lots about it and he understands much more why he had got it and is incredible proud of it! I feel the award isn't just about his commitment to being at beavers in his short beaver membership, buthis courageous fight with this vile disease, smiling whenever possible and always having such zest for life and determination.

Thursday this week was a dreadful day. We had been told by the OTs that some equipment would be delivered at ours, but the equipment store would contact us to arrange a time. It landed on our doorstep at 8 am. The driver woke Harry up, whom so needs his sleep. The driver was also rude, leaving the heavy ramp outside the house. I said I was getting the key for the garage, but he left it outside and legged it to his van.
That morning we had the stair climber delivered and training on this. We then had the wheelchair company pencilled in to deliver Harry's new chair between 12 and 3 pm. Since the company had no morning appointments, I asked them to deliver the chair to school, so Harry didn't miss a whole day. He had to be at home for the stair climbing assess that morning and we were just finished and getting Harry ready to leave the house when school phone at 11.30 am to say the wheelchair people were at school!
I had been told that no morning appointments were available! 
We rush to school, but find the company have gone and left the chair! I was told by wheelchair services, that the company was supposed to see Harry in the chair and make any adjustments needed, before leaving!
I was utterly furious!
The chair fitted Harry ok, the care taker helped me adjust the seat belt, being z brand new chair, everything was stiff! The other issue with the chair, was that it was purple! Harry hates the colour purple! I never realised they came in colours other than black or silver! Seems like a minor issue, but to a child this is huge and seeing as they are having to come to accept that the wheels are their legs and they are attached to it for most of their waking day, it's like being told what to wear! It's about giving the child some choice and thus control over their lives, which in turn helps with acceptance. I guess this philosophy applies to myself too. The fact that plans are made around delivery times, and then they are not adhered to means we lose control of anything, in a world which at present by and large is very chaotic, unpredictable and incredible exhausting for us. 
We have no control of the progression of the disease in Harry and it is currently being vicious, we have no more lifelines for Harry. Watching Harry dramatically deteriorate before our eyes is the most excruciatingly painful experience I have ever endured. The sudden realisation of the infiniteness of death is progressively haunting me. 
I try and tackle the issue of the equipment store not giving us warning of the delivery on Thursday morning and the rudeness of the driver. I speak to the manager of the equipment store and he seems to take on board my concerns. I ask him about a missing piece of equipment and he denies knowledge that the piece was coming from them. So what happens it turns up Friday morning at 8 am again, without any warning of this, from the same people who denied knowledge of it!
It highlights the shambles of some of the services around us, providing us with no support when it is so very much needed.

Harry wakes up quite early Friday in comparison to the time he used to wake up. He hadn't got him in to bed as early as we had hoped on thurs eve as his catheter had blocked and we had to call the McMillan nurse out to unblock it. 
Harry awoke Friday, very tearful, grey looking and in pain. 
Friday was my birthday too. I had managed to get out Thursday evening  late on for some much needed vino with friends, probably too much to be prepared for a poorly harry. The plan was to get Callum to nursery and we had the OT coming to fit the equipment delivered. Callum was very unsettled Friday morning. He kept hiding in his room and burying himself in his bed, in tears. Again, highlighting the impact all of this has on siblings. The amount of attention we have had to give Harry this week, because it takes so long to meet his needs, means Callum is left to it.
I decided to ask Granny and Grandad to have Callum for the day, to give him some TLC! Callum was very pleased about this!
So we get the necessary equipment fitted and Harry perks up a little by mid morning, enabling me to get him to school and enabling me to get to my hair appointment and have a lovely lunch with some of the mum's from Harry's school. 
I celebrate my birthday with the boys at tea time with a fish and chip tea and obligatory cake! Upon getting Harry to bed I realise that he has had no urine output since the night bag had been removed in the morning. Therefore, meaning his catheter was blocked again. I had watched the nurse unblock it the previous night and so felt I could do it! I successfully unblocked it and he had a good urine output overnight! Yes, result! 
Harry awoke in pain on Saturday morning and I had to give him some breakthrough pain relieving medicine, equivalent to morphine to enable us to move him. Harry does have feeling back in his legs, but not to his feet. This you may think is good, but in actual fact means that Harry is feeling the pain from those pesky cancer cells. In fact he was better off completely paralysed from the waist down, as he felt nothing and movement and handling was much easier. The goal posts seem to be ever changing and we are struggling to keep up, thus we don't have the support package we truly need, plus the current assessed support package is very slow to materialise anyhow.
Upon getting Harry up, I realise one of his legs has a lot of fluid retention. Since we had a community nurse visiting from Martin House, I ask her to look at Harry's leg. This sets off a series of conversation which, culminates in Harry's oncology consultant being involved. We are offered investigative scans at LGI as one possibility could have been that Harry had a blood clot, for which he would have to take daily injections to thin the blood, the other possibility was that the disease was progressing and blocking a lymph node. This was more likely in my opinion and anyway what would investigations really achieve, certainly no increased quality of life for Harry. I can't put  Harry though more than need be now, I can't tell him anymore that treatment is going to make him better, because I know now nothing will.
I had arranged for support to help with the boys on Saturday as I was supposed to be meeting friends in Leeds for a long lunch, but due to Harry's unpredictable health over previous days I had cancelled this. I had Briony in too, whom we have been linked to for the past 18 months. She knows the boys well and gas a great relationship with them. I manage to get out for an hour and walk into town to get some of Harry's favourite yoghurts and some duck tape to decorate his the 'purple' chair. Once outside the wind slapped me in the face, I was alone for the first time that day and thoughts of  recent events made my eyes sting with tears. I could have started to cry uncontrollably, but I had a mission, which I chose to accept. Once home, Harry seemed in a brighter mood having given him more breakthrough medication before I had left. He was very pleased with my purchases and so it was mission complete! 
One side effect of the breakthrough pain relief medication is that it makes Harry drowsy, agitated and intolerant. During the afternoon Harry had another nurse take over, this time from the continuing care provider (health). Harry couldn't warm to the lady that came and wouldn't let her do anything for him. This obviously provided me with no respite. When the lady left she said that she felt Harry would be better off with having 2-3 carers working with him, so he could develop trust with them. I explained that I have been trying to get this for the past 18 months, but I am always told they cannot achieve this. It makes me realise that it is not a needs led service, but a service delivered by managers that frequently have no in their vocabulary, whom are alien to creative service provision, hence providing a service led service. This is no good to us carers trying to get some respite and causes more problems than benefits having so many different people involved. There have been many policies over the last 20 years and  it bothers me enormously that with the recent cuts in budgets, service provision can't be maintained and delivered to really help those in need.
Anyhow, back to Harry! Generally, Saturday was not a good day, Harry perked up a little when his friend came round and they watched 'planes' the movie together, though Harry was very tired and teary at times. He enjoyed directing us from the sofa afterwards when we got the duck tape out to redesign his 'purple' chair! It is red, yellow, grey and purple now!
Saturday evening I notice again that Harry had, had no urine output during the day and so I set to again to unblock the catheter. I manage to do so, but by 10 pm no more urine had passed, so it was clearly blocked gain. Paul and I both attempt to unblock it and we both fail, with the pressure being so great that the saline solution from the syringe coupled with a bit of urine spurts out everywhere! We surrendered and called the mcmmiln nurse, whom came out an hour later and unblocked it.
We thought great, but it was blocked again in the morning. Due to Harry's pain relieving patches being increased he slept in, when he woke paul had gone to work. Harry had opened his bowels in bed and it was evident from the urine he was sat in that the urine was bypassing the catheter and was trickling out onto the bed. I call the McMillan nurse, whom arrives around 10.30 am. However,  awaiting for him to come I realise that I can't move Harry, he wants me in His room and Callum wants me too. I get torn and saddened that I just couldn't meet the needs of both my boys and so a friend came to my rescue and Callum went to play with his best bud -  Fin.
The McMillan nurse changed the catheter  as it has been blocked so many times. To do this though I had to give harry a small dose of sedation medicine - midazolam  to calm an agitated Harry. This made the task painless and easy. However, Harry was drowsy for the rest of the day, but at least his urine flowed!
I think we are going to have to take Harry to Martin house as I feel he needs more input than we can give him and we don't have an adequate support package set up to meet his care needs. 
Things are very difficult. I know this is the beginning of the end. How long, nobody can say. Harry's comfort is what is paramount  now.