Sometimes it feels like I'm a character in some Orwellian nightmare. Not because of losing Andy or because of any of the children's issues but because my life, my plans, my hopes are all controlled by someone called "The Commissioner"
The Commissioner is a faceless person, they sit in an office, they are not always the same person, they change frequently. I have rarely met them but they know me, or rather they know my daughter. They don't know her name, just her initials. It's better that way. The more you know about someone the easier it is to become emotionally involved. And The Commissioner doesn't want to become emotionally involved.
The Commissioner holds the budget. They look at their spreadsheets and they see the big figures and wonders who is eating up all of their budget, who is this very expensive person?
And then The Commissioner starts asking questions:-
Why do they need all this help? Can it be done more cheaply? Can we make cuts? We need to reassess!
This is what I live with all the time at the moment.
Clinical Commissioning Groups or CCGs replaced Primary Care Trusts in 2013. They are now responsible for the planning and commissioning of health care services in the local area.
Commissioning is about getting the best possible health outcomes for the local population, by assessing local needs, deciding priorities and strategies, and then buying services on behalf of the population from providers such as hospitals, clinics, community health bodies, etc. It is an ongoing process, and CCGs must constantly respond and adapt to changing local circumstances. CCGs are responsible for the health of their entire population, and are measured by how much they improve outcomes (NHS Clinical Commissioners Website)
It's a great opportunity for the local areas priorities to be met but the problem is paediatric palliative care in the community is really not on their radar. It's expensive, it only impacts a small number of children, budgets are limited......and the costs of supporting these children don't rest solely with social care.
Yes, I can see when you are faced with a spreadsheet you are trying to balance and there are big costs associated with one family it must be difficult.
But - this is a child. These are children. Children who have fought the biggest battles just to be here. Whose parents have sat with them night after night willing them to pull through. Who have had to make decisions on behalf of their child that no parent should ever have to make.
Last year, when Andy was terminally ill, a proper, robust continuing care package was put in place to help me look after Daisy and keep her at home while caring for Andy and the rest of the family.
Keep her at home. These are the key words. I need help and support to keep her at home. The continuing care package helps me do that, now that Andy is no longer with us, I need it even more as I try to keep our broken family together and supported. Daisy's needs are growing harder and harder to manage but I can manage them with help. Despite being asked many times by the professionals around me, no, I don't want to hand her over to local authority care. No doubt it comes out of someone else's budget and would make the books easier to balance. No doubt the people who keep suggesting it are well intentioned but sadly they have lost sight of one key fact - Daisy is my daughter, Andy and I made some very tough decisions that have meant she is here, out of hospital, at home and at the heart of a family that loves her. Dear Commissioners, I need you to hear this on behalf of all the families of children with complex needs in the community - we want to be a family but we need help to do this.
It is just not feasible for children to be discharged from hospital without robust children's palliative care services to support them. Stop trying to push it all over to the already stretched social care teams, the biggest costs associated with life limited children are inevitably health-related so recognise this and stop putting barriers in our way.
I want proper arrangements when my child is unwell - not to have to resort to A&E because our community nursing team only operates 9-5, Monday to Friday. We spend enough time in hospitals as it is, we only want to visit them when our child is acutely unwell, why can't we have community based support for our child's chronic conditions so that don't have to trek to A&E for something that a less complex child could visit their GP?
I want regular, guaranteed breaks,not just short breaks. Proper down time when I can spend time with my other children or just see my friends - a bit like you do when you switch off and go home each evening or on the weekends. With transport so that I don't have to spend three hours getting my child to their respite centre as I did last week. And when they have having their break I want to know that they are safe and that the staff are trained - so that I can properly relax and focus on the rest of my children.
I want to stop living in fear. Fear that you will reduce our respite hours, take away our nursing hours, take away any chance I have to be a proper mother to my children or to ever contemplate taking on paid work.
There are hundreds if not thousands of parents like me across the country caring for the sickest, most complex of children, day in day out. We need to know that the people in the offices, who refer to our children by their initials, who decide our fates , understand exactly what we do and how we need to be supported.
It's not acceptable to send stretched community nurses in to spend an hour going through a questionnaire to assess our needs, or ranking us on a scale of need according to a points table. Our children's lives are worth more than that, the lives we live are so much more complex than your tick boxes can ever take into account.
I wonder how many commissioners really understand what it's like to care for a medically complex child, to do the work of a nurse day in day out for no pay. To keep their child alive despite the odds. To manage the complex admin that comes with a disabled child, and often to do this while caring for other children and sometimes, as in my case, to do all of this alone.
So Commissioner stop hiding behind your desk. Come and visit us at home. Come to our hospices. Come and see us on the children's ward when we are bleary eyed from sitting at our child's bedside day in day out because we are scared to leave them . Come and understand our world. And when you tell me that you will have cut my care package and respite because your books don't balance, explain to my other children why their mum will be stressed and snap at them, why they will have to help out even more, why it's not their fault that we just can't do the things other families do.
Please understand, my child is my child, not a cost, not a set of initials, a little girl, a sister, a daughter. She has fought hard to be here, Andy and I fought hard to keep her at home and out of hospital.
I'm sick of hearing that budgets are tight and costs need to be cut. You know and I know that in the long term you won't make any savings as carers become ill with stress and siblings seek the support of CAMHS. But I don't know if you will really care, I've been doing this for nearly 12 years now, I've seen Commissioners come and go, telling me that my child is one of the most expensive in the borough, I'll still be here next year, and the year after, with my expensive child, she's like me you see, she doesn't give up that easily.
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