I read Lucy Hawkins’ open letter to Katie Hopkins at the Guardian this week. Leaving the whole issue aside, what really struck me was this paragraph:
“I have an autistic son. He’s very sweet, polite, hard-working, kind and generally lovely. But yes, he does stare at people from time to time. When we are on the tube, occasionally I have to say to a member of the public that my son is autistic and that I’m sorry he is staring. The reaction is always kind and compassionate.” Continue reading
Perception. Perception is connecting what you see, hear, smell, feel, taste with what you know and expect. It is something that happens underneath conscious awareness. It traps me every time in a space where I do not belong. Continue reading
It started slowly after a lovely day. Monday. Monday was the first true day of spring. We set out for an Extreme Easter Trail at Foxbury in the New Forest, arranged by Cadbury’s and the National Trust. It was extreme. Supergirl learned how to make fire with a spark, made smores (toasted marshmallows) over an open fire and I spilled hot coffee over my clean jeans because I overreached and thought I could manage a disposable cup. Continue reading
It is an easy mistake to think that we have all the time in the world. I’ve had a cold/flu/chest infection/asthma flare-up, call it what you will, for months and January with all its good intentions came and went in a hazy unproductive, miserably cold blur with the latter half particularly problematic. Continue reading
My four year old has not been particularly bothered by recent unwellness. She has experienced it all before, including watching me sit in bed sobbing so much that was subluxing my ribs. I grew up around people with chronic illnesses and the general approach was to protect the children from the impact it has on the sick adults. This meant that people often vanished without explanation. I was ushered out of rooms with doors closed behind me, sent on sleepovers or asked to go play outside, never knowing what was going on. I don’t plan to be a mysterious, unreliable parent who cannot be relied upon to show up. Continue reading
Trigger warning: Mention of suicidal ideation and suicide attempts.
My lingering winter cold has mutated into something very unpleasant for the last almost week. I have had an on and off fever for the last 5 days complete with chills and night sweats (that also happen in the day) that drench my clothes and bedding. I have lived on honey and lemon hot drinks and paracetamol with the occasional scoops of chicken broth, home made ice-lollies or soft toast thrown in. Continue reading
I’ve had a nasty cold since Boxing Day. It started innocuously enough, but although yesterday marked the first day of getting better, it’s progressed into quite the debilitating little cold. Just what happens when Mr Cold meets Ms EDS. Continue reading
It is easy to unravel. Get a hold of the right piece of thread, pull and pull and bit by bit it all comes undone. I don’t want to spend the rest of my life being slowly unravelled.
People are often let down – by the system, by loved ones, by themselves and I do not plan to sit and wait for others to help or sit and complain because life isn’t fair and things do not work out the way they should.
I have much to be thankful for. I already hold enough happy moments to fill up more than one lifetime. I choose to be the kind of person who rises to challenges instead of dwelling on obstacles. I am not helpless.
I don’t do traditional new year’s resolutions, but if I had one, it would be this:
“Don’t wish to be normal. Wish to be yourself. To the hilt. Find out what you’re best at, and develop it, and hopscotch your weaknesses. Wish to be great at whatever you are.”
― Lois McMaster Bujold, Labyrinth
Three 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
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!