Today has not been a good day. I really should be resting, my neck pain and POTS symptoms have flared up but I'm so stressed and wound up I have to let it out of I will explode.
Today I had my second annual review of the year by Nottinghamshire County Council Social Services. The first review didn't go very well (see Austerity by stealth) so I complained and after weeks of fobbing me off they decided they needed to do ANOTHER annual review.
This is what Nottinghamshire County Council have to say about reviews.
Why do we have to do this needs review?
This review allows Nottinghamshire County Council to:
- record the support you need in different areas of your life
- make a decision about whether you are eligible for funding to pay for the social care support you need
- if you are eligible for support decide how much your finding will be (called a personal budget)
- monitor the support you get, if we provide you with a personal budget
- investigate your concerns if you need to complain
(Nottinghamshire County Council Community Care Review and Support Plan)
What they don't tell you is the real reason for reviews is to try and reduce your package by any means possible because of the budget cuts. Eligibility doesn't even come into it. If they can find an excuse to cut it, they will!
This time I was prepared. I didn't want to lose the care package I already have so I typed up my answers so I didn't forget anything important. I'm so glad I did. They began the review by missing out all the vital details about my background and GP contact details, which were wrong on the last two reviews. Then they asked me about my morning routine.
I am married, I live with my husband and three children. My husband works full time as Head of Software Engineering. It's quite a stressful job and he commutes an hour each way to work. He suffers with stress related health problems and has very little free time. Social Services automatically assume that he can meet my care needs on the weekend. Their policy states that they should ask if he is willing and able to do this. Did they ask him? No. They said their manger would say because he is at home on the weekends he would have to do it. This directly contravenes their own policy which states:
If the person has someone caring for them the carer should be asked if they are willing and able to continue and they should be offered a carers assessment, if necessary.
(Nottinghamshire County Council Eligibility and Fair Access to Care Services (FACS))
Then we cane to the issue of Household Routines, the target of which is "I am supported to live at home". The mythical "three hour" policy reared it's ugly head again. The social workers (they sent two this time) said it was policy that no-one was allowed more than three hours domestic support per week. When I asked to see this policy their response was hilarious.
"You can't because it's not written down."
My husband questioned how can it be policy if it's not written down. The said their manager had told them that was the policy. You are only allowed one hour for cleaning, one hour for food shopping and one hour for laundry per week. I said that was completely impossible as I am responsible for a family of five people and I need more support than that.
When I complained to Social Services a few weeks ago I asked for a written copy of the policy. I was surprised when last week they offered to email it to me. I read every word and there was no mention of a three hour time limit. There was some pretty shocking policy included in the domestic routines section:
13 Domestic Routines
If this support is given staff should only provide a personal budget which would allow for the cleaning of rooms that the person actually lives in once a fortnight.
(Nottinghamshire County Council Eligibility and Fair Access to Care Services (FACS)
It also states:
In relation to other cleaning tasks, if the person is not also receiving assistance with personal care, he/she will not normally get support to help with, for example, routine vacuuming and dusting.
Which appears to directly contravene the government's Fair Access to Care Services document which states:
7. Remember each area/domain listed in the FACS criteria must be given equal weight. Personal care is not for example more important than involvement in family life.
(Fair Access to Care Services (FACS): prioritising eligibility for care and support)
That left me questioning if Nottinghamshire County Council policy is even legal as surely they are giving more weight to personal care by making it a condition which must be met before support with cleaning will be provided?
A previous social worker had tried to allow me extra time by including the children's domestic tasks in the Parental Responsibilities section. I thought this would resolve the issue but it only seemed to make things worse.
Social Services work on a system of hours required to meet needs and then pay a given amount of money for each hour. I am only allowed to spend my money on meeting my assessed needs and I have been assessed as needing 10 hours support for parental responsibilities (which is not enough as I have responsibility for 20 hours a week during term time and 50 hours per week during the 13 weeks of school holidays). I use that money to pay a child minder to take my youngest two children to school. She charges me £60 a week, which is £3 per child, per journey. That equates to 10 hours per week. Now the social workers were canny, they said I can't use my parental responsibilities money to pay for this AND cleaning because I've already spent it on a child minder, then they started debating that the child minder was too expensive and they asked why my PA couldn't do the job.
I was starting to feel ill from the onslaught of questions. I did ask them what they thought would happen if my personal budget was reduced. That shut them up for a few seconds. Then one said, "Your house would be more untidy..." I had to spell it out that any reduction would result in my physical health deteriorating. If the house is untidy I am at greater risk of falling, if jobs are not done that puts more stress on my husband, who already suffers with stress related illnesses, and my children would also be affected.
The last time I went without support it was pretty much a disaster. I was pregnant with my fourth child, my husband practically had a nervous breakdown due to stress and was eventually made redundant from his job, then I paid the ultimate price when my child was stillborn.
It would be unfair to blame social services for the death of my daughter but I strongly believe if I'd had the support I needed the pregnancy would have had a very different outcome. The situation came close to breaking us as a family and it's not something I would want to repeat.
Government policy states that:
Staff undertaking reviews must:
- work with the individual, carers and relatives on managing the effects of any reduction or withdrawal of services or personal budgets resulting from the review process.
(Fair Access to Care Services (FACS): prioritising eligibility for care and support)
Nothing was mentioned about this, but they did ask if other family members could help support me. I had to explain that my father-in-law is in his late 80's, my father is recently retired and suffers joint problems, my mother has osteoarthritis and is waiting for an operation on her arm and my sister lives with her husband and baby son on the other side of the country. They at least conceded that they couldn't offer support.
My brain began to turn to mush by this point. I was exhausted from having to argue my case, justify every minute of support I needed and every penny I spent on meeting my needs. 60 minutes of a full on meeting is enough tax anyone, never mind someone who is unwell and suffers from many complex health conditions. Unfortunately the stress tensed up my neck muscles, which in turn triggered the excruciating pain in the back of my head. When this happens there is very little I can do, other than hold my head, close my eyes and try not to scream in pain.
My husband came to my assistance. It was obvious that I was in a lot of pain, so what did the social workers do? They asked me to sign the Direct Payments Agreement. They waved the paper in front of me and asked if I was going to sign it. I managed to mumble, "Not today," so they said they would put it in the post and be in touch in a few days after speaking to their manager.
They left me in tears while my husband went to fetch my diazepam which takes the edge of my neck pain.
Thankfully the pain is easing off a little now but I am still shaky, exhausted and stressed out to the max. Now I have to wait until the review is typed up and the social workers have spoken to their manager. I have no idea what the outcome will be. For me it's simple, I need the same support as before. My needs have not changed and the eligibility criteria has not changed. I don't care what they enter into their computer software, my support package is working very well for me, if anything I could do with a few more hours but I didn't want to push my luck. Now I am at the mercy of a manager who is under pressure to cut support to save money on the budget. Everyone is in the same boat, don't you know? That may be true but I don't see David Cameron making changes to his life that put his health and his family's health at risk.
I'm left wondering, once again, whatever happened to the care in social care? I have also begun to question why I should have help from the government to do my cleaning when everyone else has to do their own? But the answer is simple. I need the help because I am ill and physically disabled.
It is not my fault that I was born with a genetic condition that causes my joints to partially dislocate or for me to collapse with palpitations and low blood pressure when I stand up. It's not my fault I can't walk very far and need a mobility scooter, or that I need seven different kinds of medication to make it through each day. It's not my fault I need help to put on my compression stockings or that trying to pick a toy up off the floor can put me in bed for a week.
Social care exists to help people like me, and it's not as if I am squandering the money they give me. I am only allowed to spend it on meeting my assessed needs so I employ a personal assistant, a cleaner and a child minder, who all pay their taxes back into the system. So why do the social workers make me feel so bloody guilty for asking for help to be able to live a normal life, which is something that most people take for granted?
Seriously, I think they come from another planet because the way they behave is about as far from human as you can possibly get.
I'm going to have a rest now. Zzzzz.....
 Apologies to all the good social workers, I know there are a few of you out there and you do a sterling job, it's just a shame that the system screws you over.