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:
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.