Wednesday, 30 April 2014

Computer says "No"

I'm still battling on with Social Services.  The review worker has suddenly changed her tune and is claiming the need for a third annual review this year stems from them not completing the second review.  I think that's odd because they made no indication that they hadn't finished and they asked me to sign the Direct Payments Agreement at the end of the meeting.  Now you don't normally ask people to sign things before the meeting is over, do you?

Anyway, she asked me to email the team manager, apparently she didn't want to talk to me on the phone.  I asked her several questions about policy and got a very interesting reply.

Regarding the often quoted "three hour rule" for domestic support the team manager explained the situation.

There is no written policy.

The review workers were essentially right when they said they couldn't give me more than three hours.  It's all because the computer says "no".  When they write up their review using the review software there is a drop down box offering four options regarding domestic tasks:
  • Support needed to learn new skills to enable completing household tasks (up to an hour a week)
  • Able to complete a few household tasks (up to 2 hours per week)
  • Support needed to complete all household tasks (up to 3 hours per week)
  • No support needed
So the maximum they can enter on the computer is three hours.  The team manager apologised that I was informed that it was Nottinghamshire County Council policy, she explained it was purely a misunderstanding and she promised to review their procedures.

I can't believe they made all that fuss over something that wasn't even policy!  It will be interesting to see if my Freedom of Information request comes up with the same answer.  Someone must have told the review workers that it was policy because at least two of them told me, with absolute certainty, that it was policy and the three hours were specifically divided into one hour for cleaning, one hour for laundry and one hour for essential food shopping.

I still have a few questions outstanding and I have no choice but to sit through yet another annual review but I really hope things can get sorted this time because the stress is having a negative impact on my health and it really is no fun.

Thursday, 24 April 2014

Moscow Rules

Once is an event, twice is coincidence, three times is a pattern.  The oft quoted Moscow Rules seem appropriate at the moment.  I am up against the enemy (Nottinghamshire Social Services) and yesterday they informed me they need to do a THIRD annual review on me.

I said no.

I wanted to say, "Are you f**king kidding me?" but I was too polite.

I have already had two reviews this year.  My needs have not changed since my previous review, the eligibility criteria has not changed and at the second review I provided written statements in answer to all the assessment form questions which they took away with them.  I have no idea why they would need to do yet another review, I have nothing left to tell them.

I asked to speak to the manager.  They said she would call me that afternoon.  She didn't call me.  I phoned again today.  She still hasn't called me.

I had a disagreement with the review worker who did my second review.  I told her I felt like I was being harassed.  These reviews might seem mundane and boring but for me they are long, tiring affairs, I have to have my wits about me, the stress takes it's physical toll and I required considerable rest to recover from them.  I still haven't recovered from the review I had nine days ago and yet they want to do another one.

The review worker said I wasn't being harassed.  I asked her what she would call repeatedly asking me to sign a legally binding document whilst I was in severe pain and unable to read the document, never mind sign it, is that not harassment?  The review worker refused to provide me with a response.

This situation has become ridiculous.  I need help.  I need the same help as before.  The rules haven't changed, so why all the fuss?

Budget cuts.

I can only imagine that Nottinghamshire County Council have made up their own unofficial policy that gives them carte blanch to do what they have to to meet their budget.  My problem is that cutting my budget will make me ill.  Very ill.  If I can't manage my condition I deteriorate fast.  I go from being able to live at home with support to needing full time care.  I don't want to end up in a nursing home away from my husband and children.  I don't want to live struggling to make it through each day in a dirty house because I'm in too much pain to clean it, living on ready meals because I have no support to cook healthy food from scratch.  I don't want my husband to be under so much stress at home that he has a mental breakdown and loses his job.  I've been through that before.  It is not an option.

So now I'm left waiting.  I'm stressed out, my head and neck pain is flaring, I feel like I have no control over the situation, even The Rowan Organisiation admit they don't know if they can help me.

Three annual reviews in two months.  It's beyond a joke and it really isn't funny.

Tuesday, 15 April 2014

Planet Social Services - a million miles away from humanity

Sometimes I wonder what planet Social Services come from.  I'm pretty sure it isn't planet earth and I'm absolutely certain it's compulsory for social workers to have their common sense surgically removed. [1]

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.....

[1] 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.

Tuesday, 8 April 2014

Sicker and Sicca

I've not blogged for a bit because life has been rather hectic.  In the past two weeks I have had my assessment for rehab at Stanmore, travelled down to Swindon to see a doctor about my dry eyes and mouth, and I've had an MRI scan of my head at the Hallamshire Hospital in Sheffield.

The Stanmore assessment went great.  They gave a presentation explaining what the course was all about.  It's a pain management course, they don't diagnose or treat conditions, they teach you ways of coping with your pain.  The course is held at two locations, a local hotel and on the ward at The Royal National Orthopaedic Hospital.  If they accept you onto the course they choose the location.  I really hope they put me in the hotel because even though the staff were all very nice, I don't fancy spending three weeks in hospital.

I had a personal interview with a physio and an occupational therapist.  They went through my questionnaire and said I was pretty typical of someone with Ehlers Danlos Syndrome.  We worked together to establish some goals, I'd love to be able to ride my bike, play my guitar, do some light gardening and most importantly learn how to pace myself so I don't collapse in a heap of pain at the end of each day.  I'm still waiting to hear the outcome of the assessment.  They have a team meeting to discuss each case and then write to you.  The great thing is, even if you are not suitable for the rehab course they don't just drop you, they will suggest alternative avenues to pursue, such as outpatients treatment or consultant referral.  I'm praying for a place on the hotel course.  Wish me luck!

I went to see Dr Elizabeth Price in Swindon about my dry eyes, mouth and throat.  She was recommended by the British Sjogren's Syndrome Association and it was well worth the trip.  She took my history and tortured me by putting strips of blotting paper on my lower eyelids.  Yes, it is as bad as it sounds!  She left them there for five minutes to see how many tears I was producing.  The wetness on the paper was only 5 mm so based on that and my other symptoms such as tooth loss, decay and gum disease, she diagnosed me with Sicca Syndrome.

She didn't call it Sjogren's Syndrome as previous blood tests show that I don't have auto antibodies, which is a good thing because it means my symptoms will not be as severe and I am not at risk of developing cancer associated with Sjogren's.  she didn't want to do a lip biopsy as it wasn't necessary and the result wouldn't influence her treatment plan.

Dr Price wrote a whole long list of things that may help me, such as eye drops and ointment, high fluoride toothpaste, mouth gel, a nose spray and I need to continue on the Hydroxychloroquine, which I have been taking on and off for the past four years.  My GP is going to love it when she gets her letter!  I'm on so many drugs already, I'm just glad I bought a pre-payment certificate so I don't have to pay for every prescription otherwise I'd be broke.

I got a surprise letter from my neurologist.  The last time I saw her we decided not to have another MRI of my head seeing as I'd already had one at Bassetlaw Hospital.  It turns out that she changed her mind after seeing the MRI as the view was "suboptimal".  The neurologist also put a name to the symptoms I've been having with my hands.  When I grip something tight my muscles don't relax properly when I let go.  She said it was Myotonia and it's a known but rare complication of Ehlers Danlos Syndrome.

I had the MRI, I wasn't in the machine too long and I'll have to wait for the results.  Hopefully it will show I don't have Chiari and my brain is sitting where it should be.

As if I haven't been busy enough I have also been battling with Social Services.  I have a Direct Payment which allows me to purchase the services of a personal assistant, a cleaner and a child minder so I can meet my care needs and live an independent life.  I have annual reviews where the social workers are supposed to make sure that my needs are being met, but usually it involves fighting to prevent my package from being reduced.

I had a review in February but I hadn't heard anything back from the social worker until I got a letter from Nottinghamshire County Council Finance Department.  My Direct Payment was being cut by £46.95 per week and they have given me one working day notice.  I was livid, I complained and I was told that everyone is having their packages cut because of budget cuts.

The manager was away so I couldn't take things further but I was told that I am not allowed to have my cleaner in for 6 hours a week.  Now I live with my husband and three children, and as you can imagine six hours a week is a drop in the ocean when it comes to doing all the laundry and keeping the house clean, but apparently Nottinghamshire County Council policy is that no-one is allowed more than three hours per week support with domestic tasks, which include cleaning, essential laundry and food shopping.  That might be OK if you live alone in a bedsit but I have a husband and three children.

Best of all the social worker who reviewed by case stated that I can do domestic tasks for two hours a week so I'm only assessed as needing support for one hour per week.  That's one hour to do everything for a family of five.  Also my husband works full time, commutes an hour each way and he is expected to do the rest of the housework, and food shopping, and care for the children and care for me.  I guess he isn't allowed to have any time to himself to relax, or shower, or sleep.

I asked the council for the policy document that states this maximum three hour limit on domestic tasks.  They sent me a policy guidance document but there was no mention of a limit.  I get the feeling they are making this up as they go along as an excuse to cut packages, but I am a cynic when it comes to social services.

Now I'm waiting for a phone call from the Adult Services Team Manager.  There is no way I will be able to cope if they cut my package, my health will suffer, my husband's physical and mental health will suffer and my family will suffer.  They don't seem to care about that though, it's all about meeting the budget.  Whatever happened to the care in social care?  Answers on a postcard please!