I am still obsessing about the adult social services assessment four days ago. I am waking up in the middle of the night from nightmares about losing the only support we have that has been stable and reliable until two days ago. I keep going over the conversation again and again, incapable of focusing on anything else (except when it triggers thoughts about the CHC nightmare we are living through and then my stress levels double). As time goes by, I am realizing more and more that as I understood the change in rules and policy the social worker introduced, our lives are about to hit another bumpy patch.
To my understanding after the meeting (unfortunately I was not allowed to have anyone else present in the meeting with me and how I regret not refusing to oblige to the pressure, but when you pressure someone with depression and social anxiety issues, they tend to cave pretty quickly), changes have been made to my funding as well as drastically reducing it despite no change in our circumstances since the last assessment other than our health has worsened under stress, that makes little sense to me.
I was told that parent enabling support can only be used to be my hands in a physical and literal sense. I have to be in the same room as my daughter and the parent enabler at all times during their shift. I was reprimanded when the social worker saw through the window that my daughter was playing outside whilst supervised by a parent enabler. Despite the fact that it was the social worker who insisted that I be alone in the room for the duration of the assessment whilst at the same time giving Chris a stack of paperwork to go through and read in a different room. Who was supposed to supervise my daughter? Read the rest of this entry »
I have been in receipt of funding from adult social services coming up to a decade and this was reduced to parent enabling via direct debit when I became eligible for CHC care in April 2011.
Social adult services provide this funding to enable me to carry out my role as a parent within a married couple with a husband who is at home full-time. I was really unwell the day of the appointment, but reluctant to reschedule and face a delay and waste a busy social worker’s time, my husband asked if it would be okay to proceed with the meeting with him as my representative.
She said it was fine. He offered to wake me up and bring her upstairs for any vital parts that may need my attention, but she said that it wasn’t necessary so he didn’t.
We had prepared some paperwork for the meeting after the WCIL, who manages our social services funding, let us know that changes had been made to direct payments and these could now be used to fund both services, adaptive equipment and short breaks. It was suggested me make a list of items within the new areas that has opened up and talk to our social worker to see if our support plan can be amended. Chris discussed this with her and she said that she didn’t think any of this was available on Direct Payments, that the WCIL are giving out incorrect information and she would look into it. After the assessment she stated that she cannot see any reason why our funding would change and that unless we can amend the support plan, we’d be reassessed again 12 months.
Today I had another assessment. She got in touch recently to ask if she could come and see me as she felt that she could not sign off on our funding without having seen me. I spent a long time today basically repeating the assessment Chris had done, but this time Chris was asked to leave the room.
He was reluctant as I had been very anxious about the meeting particularly as I have auditory processing disorder and really bad tinnitus today and worry about misunderstandings and miscommunications. I told him it was okay to go, because I felt that insisting that he would stay would create conflict and I do not want to the person who is carrying out an assessment that has obviously already hit a roadblock - otherwise she wouldn’t be here – to be unhappy with me. So he left.
I followed my usual strategy for getting through meetings where I am missing out on about 50% of what the other person says. (I’ll write more about that strategy later). I put on my bravest face, smiled a lot, explained a lot, abbreviated a lot and got very tired after having to summarize my whole life, my husbands’ and my daughters covering work, family life, hobbies, health, environment, finances, funding, the current situation with CHC and how I am making use of current funding now and in the past in about 45 minutes or so I think.
Afterwards, I went over the meeting again and again in my head, it’s what people with OCD may do when their coping mechanisms are failing and the more I thought about it, the more I worried that I hadn’t told the whole truth. I talked about Chris getting up at night, about twice every hour, to go through to Aeryn’s room and that’s why I do more of the parenting on most afternoons so that he can have a rest. I didn’t mention that he doesn’t do all the checks alone. He helps me and I help her until I either have a seizure or fall over.
It gets so complicated so quickly. It is so hard to disentangled our lives, our issues, the support we need and distill it into neat little packages that meet whatever particular assessment is happening today. I confess, I don’t even know the name of the person who was here today. I didn’t bother checking our records because I know she will be here today and gone within a month or two and I will never see or hear from her again.
What’s the point of even trying to meet someone on a humane level. I am being assessed. She is the assessor for this fraction of my life just for today. We meet for a short time, both being carried along on a conveyor belt going in opposite directions and I do my best to hand over a flask of the info that she needs in the shortest time frame possible.
I have a migraine level 6 which means that the second part of the meeting is a blur for me. I was turning my neck to the side and my spine was subluxing after 30 minutes in that position, my back was hurting sitting upright in bed without support, my head was pounding as if someone had left a deaf metal drummer inside it and as I had to turn the air conditioning off to hear, I was getting hot, dizzy and slightly disoriented. Still, I kept my brave face, my big smile and tried to talk faster to wrap things up.
I answered what I assumed was the same questions – about my health, about what I can and cannot do, about our situation, about my daughter, about husband, his role as carer and his health issues, about our house and the people we employ. Which medical specialists does the little one see and how often, what medication I take and who administers it, what my husband does in the day time because he isn’t working (and immediately I am defensive because so much our disabilities and the support he provides is invisible and it generally goes unnoticed in these meetings as if he sits around all day watching day time TV. I have seen him fall down the stairs, break a cup because his hand was shaking so bad he couldn’t keep hold it – that happens at least once a week – and I’ve seen him asleep sitting upright against a wall on the floor waiting for the little one to have a go at putting on her shoes and drifting off because he is that sleep deprived and exhausted).
I have no idea if the scripts worked out for me. I attempted to explain, after being told numerous times that I am confused over what funding pays for which aspects of support, that I am not confused. We do much of the accounting, employ staff and have been in receipt of support for about 8-10 years and have had annual assessments from over three different departments spread over multiple local authorities (and by the way wiltshire is still split between north and south despite technically being one authority) and this local authority for 7-8 years and we were in the meetings where we spent months cobbling out who should pay for what between NHS and CHC and we were in the meetings when adult and children services were picking through which responsibilities is which and I have read all the paperwork that has been written about me and some of that paperwork has been written by me.
I am a reasonably intelligent person and I know the theory forwards and backwards, but theory never survives human contact and so things get messy. I was getting frustrating because I couldn’t talk properly, I rambled and I couldn’t understand a lot of what she was saying and heard a few things that were odd so obviously my brain must have scrambled them but I had nobody in the room who could verify the information for me. At that moment I was having some issues with communication and so frustrated that for some reason all assessments are always done verbally with nothing written other than notes that is not shared with me. Give me DLA forms any day over this.
I did my best to not let my frustration show. I didn’t want her to feel that I was being negative or that I was confrontational because I am terrified of loosing the support we have that is actually helping on a daily basis. I have a lot on my plate and this is just one more fairly simple straightforward thing that I could now see snowballing into many long meetings that will cause me anxiety, stress and keep me on tender hooks for weeks to months.
She wanted to cut my funding by half because the agreement that was made 2 years ago when the little one was not in nursery and now she is and those hours have to go. I pointed out that this was brought up last year at the annual assessment and the social worker carrying out the assessment reassessed our circumstances and amended the conditions because she felt that due to Chris’ health issues and hugely demanding care role for two, both in the day and at night, I was taking on more parenting responsibilities in the day time and as such should receive support for doing so.
She replied as I understood it that the assessment carried out last year held less weight than the assessment carried out two years ago because the older assessment was done by someone more senior and as such it overruled the more recent assessment and so, the rules that she will be following are the ones set-up 2-3 years ago and will not take into account the most recent amendment or any changes in circumstances in the last 3 years because a deal was made then and it is her responsibility to uphold that.
I said fine. I also pointed out that we have never quibbled with the amount of support we receive. We have applied for support when we were advised that we meet the criteria for said support and that it would be a good idea to apply for it. We have accepted support we have received, except when I refused CHC care for 2 years, but we have never asked for an increase in support unless our circumstances had changed and we have always accepted the outcome of assessments and level of support provided. We don’t plan on changing that as we feel that there is a bigger picture to take into account that we don’t know about.
There is a set budget for support within a local area and I would never want support incorrectly allocated. If someone else who is worse off than me receives less support because I am getting a bigger budget because we are receiving more than we should, I don’t want it. One of the first things you learn living life with a disability is that nobody’s needs are ever met. Only critical needs are met and even then its usually only to a certain extent. I accept that. I would prefer to have the opportunity to go back to work and pay for more of my expensive stuff myself and also contribute to the pot instead of just using up money from it, but we spend our lives in meetings and assessments just to receive funding to scrape by and even then, that funding is constantly reassessed and often shrinks a little each years as regulations tighten up due to budget cuts and I start to feel like a fish stuck in a small pond with the water slowly being let out.
But I do understand that there are people worse off than we are who need funding more than we do and by all means, give it to them. Allocate what we are entitled to within the local budget, we will find a way to make do with what we have. Just don’t tell me that halving my funding is a result of a decision someone made 3 years ago during an assessment that is suppose to determine what level of funding I need now. Three years is a long time and a hell of a lot more has changed than my daughter now goes to nursery. If we are going to take changes into account, by all means, lets, but we can’t just freeze every thing at 3 years ago except for this one thing. That is not a fair assessment of my current needs.
I didn’t have the capacity to say that during the meeting. I wish I did. I wish I was able to articulate my points more clearly but instead, I just answered questions, agreed and tried to wrap it up quickly before something bad happens and I freak out another assessor like I did the community matron who asked if she could please leave the room because me subluxing my shoulder and then squirming to get it back in whilst Chris held on to the bit that was still in a good spot was too upsetting to watch.
The things that bothered me the most was that I was told that parent enabling funding was not for people to come and play with my daughter. I responded by talking through our routine and I think that was one point my frustration shone through. I have been fighting for independence, as a person and as a parent. I have spent so much time crying and on the brink of a nervous breakdown because I couldn’t cope with the fact that I couldn’t take care of my daughter independently.
The one thing I have been very focal about is that I want more personal independence. I want to do as much as I can do. I want to live in an adapted environment so that I don’t need strange people to give my daughter a bath or push her on the swing or pick her up when she falls and dislocates her knee. I want to do that. That is my job. But I can’t and it is immensely frustrating to realize that.
Some things I will never be able to do, but others, others I could do given access to an adapted environment and adapted equipment. But social services do not fund equipment for me. They only fund parent enablers to be my hands and do the things for me that I cannot do. I am so very aware of this fact.
My frustration set aside, the reason this came up I am pretty sure is because she asked my daughter what her parent enabler does and replied that she “picked me up from nursery in my push chair today and she helps me and helps take care of me and plays with me.”
I was very proud of that response. One of my other high horses is that despite my daughter’s complex needs, I do not want her to excluded, isolated or disadvantaged because of it. We work very hard, her extended family work very hard, her nursery work incredibly hard and so does her paediatrician, GP, rheumatologist, dietician, physiotherapist and occupational therapist to help erase barriers so that she can lead an active and full life alongside her peers.
She has had personal assistants around the house her whole life. We have introduced them as people who help us do things as well as people who are here to have fun and play because it is the parent enabler who is able to give her a push on the swing and to chase her around the garden whilst mummy sits on the sidelines and watches. To her, they are not personal assistants, they are not carers, they are part of our family and her friends. I resented the implication that I pawn my daughter off on people I pay by the hour so that I can lie in bed all day because I am sick.
I work so hard, I do so much and I am there for her. I am always available. I spend as much time as I can with her and have sacrificed many things, including at times my own health, to be there and to be the parent she needs. It hurts when the implication is there that I may be gaming the system to spend less time with my daughter and have a convenient baby sitter around so I can have an afternoon nap.
In conclusion, I do have to say that this is my personal subjective experience of today’s meeting. I have an appointment for counselling tomorrow because my stress levels have destroyed many of my coping mechanisms and I am struggling with my depression, anxiety, social phobia and OCD. Part of my OCD is fixating on details and I am sure this assessment looks very differently from the assessor’s point of view. Regardless, this is how experienced it and I needed to express that opinion and I am doing so in my personal blog with the clear statement that this is my subjective experience and point of view.
It was a horrible meeting for me and I have no idea how long it took. I am anxious about the outcome, but I am not panicking about it. We will deal with whatever happens . It is after 9 pm and many hours have passed and still, this meeting is all I have talked about all day and thought about all day.
I worry that I misunderstood the questions and gave the wrong answers – that has happened before and caused huge issues for us. I worry that I misunderstood what was happening and the conclusion of the meeting because I really struggled to make sense of her worlds and generally answered questions after only hearing 2-3 words out of a 6-7 word sentence and guessed at what was expected of me. I worry because this is another cliffhanger. I just really wish life was less of a cliffhanger. Its been weeks between assessment 1 and assessment 2 and it’ll be weeks until assessment 3 and then weeks probably before a decision is made. Months in total where we don’t know what funding we will have for the next financial year or what we can spend it on. We can’t employ people, we may have to fire vital staff who has become a part of our family and do an invaluable job to help us get through the day and who my daughter has known for as far as her memory goes back. I don’t know. I won’t know for weeks to months.
It may be that we can get the same level of funding by accessing more avenues – but that would take a long time as these things do and by the time new funding from difference sources become available we would most likely have already passed the point of being able to keep the same staff, placing us in a situation of having to fire reliable people with a ton of experience with our unique situation that we love and trust only to replace them with new people who do not know us, have to be trained again and my daughter is subjected to another cycle of strangers coming and going to help her take her clothes off, help her use the toilet and other intimate things that an almost 4 year old most certainly does not want a strange person to be doing.
But lets not forget. This assessment was not for my daughter. It was not for my husband. It was not about my family. It was only for me in the role of a parent with the predicate set in stone that I should do 50% of the parenting at most and my husband should do his 50% regardless of personal circumstance and that’s that. My 50% of parenting by the way amounts to 15 hours per week. Good to know.
I find these things very stressful, not so much because of words uttered but because of the implications. Providing me with 15 hours a week of parenting support says a lot about how much I am valued as a parent. Telling me that parent enablers are not here to play with my daughter, well I disagree. If I am dressing up in silly hats and so is she, well then I want to employ a parent enabler who will dress up in silly hats right alongside us, not someone who will be sitting there cast in stone, watching and waiting to be my hands when I need them to do that. We have had both and adults who can be silly are few and far between and with the serious issues we deal with, we need as much as silly as we can get.
I need people who can do Darth Vader impressions when I have to use the noise nebulizer to keep breathing and who can come look in the toilet bowl with my 3 year old when I’m throwing up and say “I think that’s blood, that’s a piece of salad and that might be a bit of cheese, what do you think?” I need people who can scoop up a 3 year old with a dislocated knee and bring them to me so we can sort it out and get her walking again. I’m sorry, but I need people who can be more than just my hands.
I was told that we needed to add 2 more assessment and funding streams to the multitude we already have which may or may not make up for the funding cut proposed. So many assessments, so much paperwork and I have to keep telling my life story again and again in sound bite size and then wait, for weeks to months to years, to find out where the pieces may fall.
Living with a disability is challenging, very challenging. Living with the system that is suppose to be providing the support we need to carry out day to day tasks safely, no more and definitely usually a lot less, is a bigger challenge. It means living life under a microscope all the time and never knowing when the rug may be pulled out from under your feet.
It sucks. And tonight I am very very tired.
I have been getting migraine headaches for as long as I can remember. It runs in my family and I have been intimately familiar with al the symptoms for decades. I focus a lot on migraine triggers – too much caffeine, not enough water, too much cheese, chocolate or alcohol, citrus, tyramine, tomatoes, the weather, irregular sleep, not enough sleep, too much sleep, barometric pressure, loud noises, bright lights, stress, anxiety, depression, too much strenuous exercise, relaxation, excitement, hormonal changes.
The list goes on and trying to pick my way through it try and reduce the frequency and severity of my migraine attacks is headache inducing in and of itself. I can’t control it all, I cannot regulate it or avoid it and in some cases, due to the many variables involved it is impossible to identify all triggers that are unique to me. It is not a very positive process as it focuses on things that I cannot do, cannot eat and cannot control (like the weather). Focusing on avoiding things that are sometimes unavoidable quickly becomes one more thing that makes me feel powerless. Read the rest of this entry »
The result of the complaint we filed about my Personal Health Budget at the start of the year should be made available to us soon. It has made me think about the last year and everything we have been put through and it makes me wonder if this will have any impact on moving things forward.
I think my biggest sadness and regret about the process is that I am still very positive about Personal Health Budgets and I seem to be the only one. I think they are an amazing opportunity to improve not just health but also quality of life. If you can get one, that is. I am saddened by the fact that my willingness to work with people has not worked out well. I am frustrated by the process and the length of time it has taken, I am frustrated by the disregard of guidelines, policies and procedures with regards to Personal Health Budgets and it is worrying that still, nobody is taking responsibility for implementing my Personal Health Budget and everyone seem to have their own agenda for me that does not coincide with my goal of getting a PHB up and running well. Read the rest of this entry »
In a previous post a few days ago Lily mentioned that an OT’s report had been written but that there were a number of problems with it. She said that she would post it up along with some of her comments but she has had a bad week health and stress wise and asked me, Chris, to do so.
I’m working with the report and some of her notes but will try and do it justice.
Putting it in context at the beginning of April I had a meeting to try and get things moving for Lily’s PHB. The biggest sticking point was to do with equipment. To cut a very long story short we were asked to see the local OT. She would prepare a report. This report would be either a report covering things that the OTs office could fund or a report looking at what was in the PHB care plan and checking that everything in there was safe and not contraindicated in some way. It was not and is still not clear which was requested.
She visited twice in company of the community matron and after some false starts Lily and the OT spent some time looking through the care plan that had been prepared by the previous community matron. The meetings seemed to go well, if somewhat confused and she left saying that she did not see any problems with any the items being fundable via a PHB and that she would write a report stating that. She also promised to copy us in on the report when she finished it.
A month later we were getting concerned about not hearing anything and I (Chris) emailed and then phoned up to check on progress. After a week and a half of phoning multiple times a day and leaving messages as the OT and Matron always seemed to be in a meeting or stepped away from the desk or not in until lunch I heard back from the community matron’s manager. She wanted to come out and see Lily. I enquired as to the report from the OT and was told it had been sent to CHC 4 weeks ago.
This was news to us and had not been mentioned in the contact’s we had had from CHC via PALs. I asked if we could have a copy but was told she would have to check with CHC and get back to Lily. I pointed out that the report was about Lily and she had a right to see it and that she had already been promised a copy. This got the result and 2 days later at 10 o’clock at night, the day before the meeting an emailed copy of the report arrived.
To say we were disappointed and confused would be an understatement.
I have recently had long discussions with the local community matron about using an Epi-Pen as part of the treatment protocol for Type 2 Brittle Asthma. She insisted that under no circumstances is an immediate administration of adrenalin in a preloaded syringe an acceptable treatment. It is not the first time I have had this conversation, it comes up quite regularly when dealing with medical professionals unfamiliar with Type 2 Brittle Asthma because it is an extremely rare condition.
I told my usual tale. Asthma and Type 2 Brittle Asthma is not the same thing and is not treated in the same way. Here is the Clinical Knowledge Summaries for Asthma. There is no mention of Brittle Asthma or the use of an Epi-Pen and as a rule, unless someone has knowledge of Type 2 Brittle Asthma, trying to locate the appropriate management recommended can be difficult. My new personal assistant did a little digging for me in recent medical journals and articles and it wasn’t hard to find many references on the use of a preloaded adrenalin syringe. They are listed below.
My life depends on how well I manage my asthma and how quickly and effective I respond. As someone who has required manual ventilation more than once, I take my asthma and its management very seriously. I must admit that when I get severely depressed, like I have been the last few months, I do not take good care of myself. Luckily for me, I have a husband who steps in and says, here, take your steroid inhaler whilst I watch you take your steroid inhaler and it’s getting pretty bad now, let’s get out that nebulizer and make it a little better okay? Read the rest of this entry »
Month 3 is approaching and although I am now receiving the funding from my PHB, paid into the only third party management account (direct payments are not an option until 1 October 2014 and only 1 third party has been approved by Wiltshire CCG) available to me, my support plan is yet to be implemented. Talk about putting the cart in front of the horse.
Lots of confusion and miscommunication is still ongoing and nobody seems to know exactly what their role is. The health professionals nominated by CHC that I have spoken to so far have written or emailed me to inform me that they have no role in my PHB and is unable to look over my care plan or get involved or help in any way. CHC remain insistent that the care plan cannot be implemented until a health care professional states that it outlines a safe and still appropriate way to manage my health needs. Hello again Catch 22. Read the rest of this entry »