Time to find some peace

healthThree assessments/meetings of the week done and all I want to do is forget that doctors and all other professionals who meddle with my life exist. It isn’t a particularly fair emotion to feel, most of the people I deal with about my health are rational, caring, trained and experienced professionals who have treated me with courtesy and respect.

It is nonetheless how I feel. I want it all to end. I want to stop writing about it, stop talking about it, stop thinking about it. Somehow, my health and how I managements always seem like a perfectly logical thing to live with and manage. The written rules are sensible for various procedures and processes and I always make the mistake of thinking that applying one to the other should be a simple, logical, fairly objective straightforward process.

It never is. Continue reading

Notes for an advocate from Chris

We’ve spent some time today talking with and confusing an advocate over everything that has happened with the PHB in the last year.  After an hour of around and around and watching her get even more confused over what has happened we realised we had to boil it down.  With another meeting tomorrow we have tried to get the last year or so of PHB madness into a few paragraphs.  We succeeded and it turned out reasonably well I thought sharing it here would be sensible.  Its a simplification – there’s no getting around that – but it hits all the high points and makes sense to someone new.  Chris.


So here they are in full written from Lily’s perspective:


 November-December 2013 – PHB approved, care plan drawn up by myself, my husband and main carer, the community matron and two representatives from CHC. The community matron at the end of the meeting confirmed that the care plan was safe to implement and appropriate to meet my health needs. The two representatives from CHC went through the ticklist of the 9 essential criteria and said that it meets all of them. I was given an annual budget, put in touch with the accounting firm and told that the accounting firm needs to submit the care plan with a budget sheet they compile for the record and payments will commence shortly after. All assessments were done, but the care plan couldn’t be signed until the budget sheet had been compiled, but this was just a formality and nothing to worry about. It all should be up and running within a month. It isn’t.

 January 2014 – My PHB is “flagged for review.” first week in January. I am told, in writing that the reason for this is that the care plan does not meet the 9 essential criteria and a meeting is required to amend care plan to meet the 9 essential criteria.

 1 April 2014 Meeting to discuss how to amend the care plan so that it meets the 9 essential criteria:

  • Resolution 1: Care/employing a PA, accounting fees, one single adult annual National Trust Membership, 1 Fitbit and 1 annual Gym membership approved.
  • Resolution 2: All other items on my care plan can only be funded if the local NHS team cannot fund it. Once the local team have funded what they can, everything else can be funded via my PHB without requiring any further assessment. Items will be added to the above approved list until a health professional sign off on my care plan. The OT & community matron was tasked to determine what can be funded through them, they reported back that they are unable to fund anything listed on my care plan. However none of the items was signed off by Wiltshire CCG after the report was submitted or to date, 6 months later.
  • Resolution 3: My care plan and all items on it has to be signed off by a health professional(s) as safe and not detrimental to my health. The last community matron did this in November, but as she has left her post and 4 months had passed, another sign off is needed. The new community matron is tasked with the responsibility, but she abdicated in writing a few months later and said that this falls outside of her remit. Wiltshire CCG then said that a list of consultants have to sign off on items that fall within their speciality, my consultants and specialists refused. Wiltshire CCG then said if my GP and the local NHS team submit a joint report, my care plan can be signed off and no further assessments or meetings would be required. A joint report was submitted early in July 2014, my GP and lawyer was assured that this was all that was required and that my care plan will now be put into effect. It wasn’t.
  • Resolution 4: NHS England has to state whether a certain set of items can be funded. We received a response to this in the complaint of 1 July, stating that NHS England said that only items on the support plan can be funded, that to fund a vegetable and fruit box I required a dietician’s assessment to fund a third of a box, to fund softer tissue and toilet paper I needed a clinician to sign off on it specifically and a few more caveats. All other items bar exceptions, including the above, listed in bullet point form, was approved pending resolution 3 (2 had already been carried out).

October 2014 letter:
I received a letter in late October stating that my case manager for the last 18 months now feels that despite having access to 2 DST CHC assessments, full access to medical records of more than a decade, full access to multiple healthcare professionals involved in my care, including the social services OT that I have been working with closely for 3 years and the previous community matron’s notes, who was the primary person I met with regularly for over 2 years, that she has insufficient information about the scope of my health needs and as a result, the PHB is now being put on hold until she can determine the extent of my health needs. For this she will require further assessments from multiple healthcare professionals. Whilst this is ongoing, she also informed me in the same letter that she is starting up the annual review for CHC eligibility for the next financial year at the same time.

So thats where we are – hope this all makes sense now!

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


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