On the state of the PHB

The old cliché is that to progress you take two steps forward one step back. Getting a PHB in Wiltshire is one step forward and one step back.  Lily was assessed eligible for CHC care in August 2013.  Since that point it has been a continuous stream of meeting after assessment after assessment and now apparently a complete medical reassessment.
The system is designed so that there can be an annual check both of eligibility and medical situation for the long term seriously disabled or sick.  This 15 page assessment called the DST talks to the patient and looks at their history, groups types of symptoms, talks to OTs, physios, GP and specialists.  It is carried out by a qualified medical practitioner and the result is mathematically scored to define their need.  From this the CCG makes a decision as to the level of funding and within 28 days a package should be in place.
This is a sensible system.
This should mean a long term patient gets reassessed regularly and then has a decision made and then is helped until the outcome of the next assessment in a years time.
Lily has been stuck in a limbo of meetings and requests for the last year which has culminated in a set of requests to go an see multiple specialists and practitioners because ‘further assessment was required in order to acquire create understanding of the scope an extent of the medical conditions’.
 She has also been informed that as 12 months are now up she will need to go through a medical assessment of her medical situation and eligibility for CHC care.
I didn’t mis-state that and you did not mis-read it.  After having had CHC care for 3 years CHC feel they do not understand the scope of her conditions and so would like a complete reassessment.  This assessment is to be concurrent with another complete reassessment of her eligibility and medical situation and this is all after a year where they have been unable to get a functioning PHB operating.
I’ve been through every website and every book both on a local and national level on the way this is supposed to work and nowhere (including in the timetable give to us by the CCG) can I find any justification or rationale for two sets of concurrent assessments.
They assessed Lily last year.  They found her eligible for help.  They have not helped and now seem to wish to reassess last years assessment as well as starting this years. At the same time.
Don’t get me wrong – we’re perfectly happy to have her reassessed for CHC care.  Its right and proper that there be checks both in case her medical condition has worsened and in case it has improved.
But shouldn’t there be some decisions made at some point and help given as well?
Written by husband and Lily’s primary carer for the last 11 years, Chris Ellis

Just tired of Personal Health Budget process

I feel like the conker in the middle: alone, surrounded and trapped
I feel like the conker in the middle: alone, surrounded and trapped

We have received a letter address to Mr C Ellis by recorded delivery early on Saturday morning, 48 hours ago. I stopped eating, stopped sleeping and started worrying.

I handled it better than I have done until now. Usually after a letter from Wiltshire CCG, I burst into tears, have a total meltdown, cry for an hour and wonder if killing myself might be the solution to this problem. (Don’t worry, I have an amazing husband at home who has lived with my mental health issues for quite some time and we have decent strategies in place to make sure I don’t actually act on how I feel until I feel differently). Continue reading

Some things are too big to be seen

beach

Supergirl has whooping cough. Thank goodness she had her immunisations because if this is the milder version, I don’t want to know what it would’ve looked like in full force. It’s coming up to two months and like these things happen, we didn’t think much of it until the distinctive cough arrived. We recorded it, played it to her paediatrician who made the diagnosis.

She was very nice about it, asked very gently whether we knew that sometimes its called the 100 day cough and that there’s a while to go before she will get better. I sat with a huge grin on my face. She’s going to get better, it’ll clear up and go away, that’s awesome. I can 100 days, no problem, just as long as it goes away. Continue reading

Be kind, be polite, be helpful

Toddler balancing on a wooden beamThe life of an almost four year old is more complex than I ever imagined. It is a fine balancing act. My daughter is old enough now to tell me with great detail about her day at her preschool. For the most part, all goes well. She makes friends easily, she is confident in both her abilities and herself and she does not succumb to pressure, either internal or external.

Fatigue is her biggest obstacle. She tires easily and some days she’s just listless and does not feel like either interacting or doing much of anything. She has a card at nursery that she made herself with help from the SENCO (special education needs coordinator) which she can hand to any of the adults when she gets too tired and needs a rest. Continue reading

Migraine is not just a headache

migraineAutumn is usually my best months when I experience the least symptoms. Not this year. The two week migraine ended just before the weekend and I was left in that half zombie state called the postdrome phase. My sleep changed from 2 hours in 24 in 15 minute snatches to sleeping for 10 hours only woken up by external factors and sleeping through joint dislocations. I still couldn’t concentrate and I felt like I had the worst hangover in the world for days.

Last night, another migraine struck. I don’t know why, I don’t know what I did wrong, but there was no warning and no aura which is rare for me. I was fine one minute and in less than five minutes I was curled up in a ball holding my head, rocking back and forth and muttering silly things like “I can’t deal with this level of pain. I can’t do it. Make it stop, make it stop, I’ll do anything to make it stop.” Continue reading

Floundering

2014-08-27 11.32.31

The last week is a blur of incoherent moments that exist outside the restraint of time. I have slept roughly 14 hours in the last 160, so my FitBit tells me and the longest I have been asleep for is just under 2 hours; subsisting mostly on 15-25 minute naps with awake times in between mostly longer than the asleep times, even at night.

Why is sleep proving so evasive? Let’s recap. Continue reading

I have more than one story to tell

russian dollPeople with disabilities, particularly those with invisible disabilities face many challenges that can be hard to come to terms with. Often, it is up to us to come to a place of acceptance and understanding without much, if any support.

It is up to us to become experts in our condition, to struggle, usually for years if not decades, to gain access to the support we need that might allow us to become active members of society and it is up to us be our own advocates on top of all the other difficulties we already face. We might not even be sure that we want to claim the title ‘disabled’ for ourselves and accept the social stigma and negativity that often comes with it. Continue reading