I hate having to reschedule

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scheduleI have OCD and Chris has Asperger Syndrome. We thrive on schedules and predictability. Knowing what is going to happen and when makes life a lot easier. One of the hardest implications of having variable conditions is that our health has a tendency to mess up my schedule without warning and often at the last minute. I hate cancelling anything. I hated calling in sick at work. I hate having to adjust my plans at the last minute because I am suddenly no longer capable of carrying out the plans we have made.

Today was suppose to be a day for family. We had planned to stop in at relatives in the morning and then go on to meet up with other family for lunch. We had arranged to take a picnic for lunch and have scheduled support staff to be in later in the day so that we had help when we got back tired. It hasn’t worked out that way. Read the rest of this entry »

Wiltshire CCG is not following best practice guidelines, but what can I do about that?

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phb nhsMy Personal Health Budget has gotten very complicated and confusing. We are in the process of compiling paperwork for a formal complaint to submit to the Ombudsman and there are hundreds of pages of e-mails and supporting documentation to print out, organize and file. Just my support plan is almost 30 pages, having grown from 2 sheets of A4. The attached budget grew from half a page to multiple confusing pages riddled with duplications after being amended at Wiltshire CCG’s request by Compass.

We have spoken to a lawyer who has given us some pointers on how to put our case together for the Ombudsman and I cried looking over the paperwork. I think I should be angry, but I am not. I am just stressed out of my mind, sad and frustrated. Sifting through all of it has been very stressful and I am saddened by the fact that what could have been a simple, positive experience by everyone involved has turned into an going nightmare now ticking over into more than a year with still no real end in sight.Every time we complete the step outlined, another step is added on before my support plan can be signed off.

Instructions go back and forth, paperwork is lost for weeks on end multiple times, money is paid into the wrong account when it finally is paid (not that I am able to use it for much), what is said in meetings is denied in writing after the fact, the support plan is signed off by the local community matron and within a week after she resigns, the document it is flagged for review and the process is halted for 3 months to the earliest meeting date Wiltshire CCG’s CHC team could attend. Every time I have arranged for an advocate to be present, meetings are rescheduled or appointments not kept and nobody shows up. Read the rest of this entry »

Anxiety in a suitcase

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Trigger warning: Themes of depression, anxiety and suicide that some might find distressing.


My mother once took a large piece of paper, big roll of tape and a thick black felt tip pen and wrote “Please do not use the bell” in big letters and stuck it up over the front doorbell button. Read the rest of this entry »

Coping with the negative impact of a bad assessment experience

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keep_calm_and_carry_on_testing_by_reaperfox-d4r57yhI 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 »

Social services parent enabling annual assessment

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paperwork climbingI had an appointment at my house a few weeks ago for my annual assessment from social adult services for the parent enabling funding I receive.

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. Read the rest of this entry »

There is always something positive

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2014-07-06 11.15.39 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 »

And here I stand

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waiting game

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 »