“107. Reviews of a child or young person’s continuing care should be an opportunity for assessment of needs and how they are being addressed by the care package. It should be made clear to the child or young person and their family that reviews are designed to ensure that the child or young person’s continuing care needs are being met on an ongoing basis and that they are not financially motivated.”
National Framework for Children’s Continuing Care 2016
About a year ago I wrote about Haringey CCG sending me a letter to say Freya’s home care package was cut, without having carried out an assessment of her needs (See A mistake… or something else? Feeling queasy about continuing care) . Common sense prevailed and apologies were provided – an administrative mistake by a new member of staff. I felt relived but miffed – ignoring review processes clearly set in law and cutting care packages of the most vulnerable people in the society should not happen because some new guy does not understand process. Nevertheless life goes on (as do other battles to ensure Freya’s care needs are being properly met), so we moved on, leaving the matter at that.
Fast forward to yesterday when I received call from our care agency . “The CCG has been in touch” the manager said apologetically. She went on to explain that the CCG had decided that 20 weekly hours of Freya’s care package had to be used for nursery and if she didn’t go, the hours would not be provided. The decision was immediate and the agency could not do anything but follow the instructions from the CCG – after all their contract is with them.
I was gobsmacked. Since last July Freya’s care package has been 90 hours a week with no specific stipulation of nursery hours. These hours were decided on basis of her health needs – she did not even start nursery for 6 months after the assessment. The hours have largely been delivered for months before she went to nursery and during school holidays. The decision and the entitlement to the hours has been recorded in both a letter informing me of the panel decision and in the letter from the director of commissioning Rachel Lissauer. And absolutely nothing mentioned any hours being earmarked for nursery only.
And don’t even get me started on the law. There is a prescribed procedure for reassessing NHS health care packages that involve clinical evidence, family involvement and transparency. Not civil servants clandestinely trying to act as the judge, the jury and the executioner, however much they fancy cutting off services to save cash.
Fool me once, shame on you. Fool me twice, shame on me. I can’t be dealing with Haringey CCG trying to cut Freya’s care packages illegally several times a year. Something has to change. So I’ve been doing my usual; writing emails, researching the law, getting lawyers involved. But it can’t be right that the same mistake gets repeated and each time I have to spend time and money getting them stop acting legally.
So I publically ask you, Haringey CCG:
- Do you think it is fine to cut NHS care packages without any formal review?
- My daughter’s care package was determined in relation to her health needs, including that fact that she needs a tracheotomy and ventilator to breath. You now say that during school holidays or if she unwell and cannot attend nursery the help we get should be reduced by over 20%. How does that work? Does my daughter breath normally during school holidays? Does she not need an artificial airway during holibobs? Do you actually think her health care needs go down when she is too unwell to attend the nursery?
- Even if you think all statutory procedure for review and assessment of care needs is futile (and it is starting to seem that this is your view) don’t you think you should tell me when you cut the services? Do I just sit at home and guess whether my daughter is entitled to care on a specific day? Or is it that without a decision it’ll be harder for me to start escalating the matter?
- And finally, if this is an instance of a new member of staff not knowing what they are supposed to be doing, please start thinking about whether you have issues with your recruitment, training and management. The National Framework requires you to have set procedures and policies in place to make sure your staff doesn’t break the law left right and centre. Bearing in mind we are facing the same situation where, on any reasonable analysis, your staff is trying to effect illegal cuts to my daughter’s care package, there is something in your organisation that is not working.
So onto the battle we go. I cannot but think that if this happening to us twice in one year this must be happening to other people too. Please get in touch if you want to share your story. I am thinking there must be more families like us out there and if we group together we fight these injustices together.
P.s. You can tweet a link to this blog @HaringeyCCG. Maybe if they get some tweets they might be more worried about their illegal actions.