If you know me, online or in real life, you’ll know my opinion on Carer’s Week. It comes strictly under the heading of “Piss on Pity”. I’m not a hero, sung or unsung*, I know the extent of the work I do on an hourly, daily, weekly, yearly and decadely basis.( yes, made up word, I’m tired and don’t care ;p ) For all the articles on the radio, TV and print, the patronising words, the offers of pampering, the “you’re so brave“ in 20 years, 21 in August, not one bit of difference was made to me by Carer’s Week.
I never learned a single thing from it that helped improve my life, or my son’s life and the wide lack of regard, anger and passion for change by society, governments and the third sector for 10% of our population is truly astonishing. I will moderate my words slightly to say I think there is a place for Carer’s Week, to encourage those who don’t identify as carers to acknowledge that, and learn that perhaps they can get some support and it’s possibly a place to begin networks for those new to caring.
For me, I feel forgotten, ignored, taken for granted. Invisible.
Anyway, a few carers I know on Twitter took hold of our own hashtag #RealCarersWeek. We sought to vent, to help people understand some of the utter shengus we go through, the high level of responsibilities versus the almost complete lack of rights. I got into the hashtag at the start of the week, quoting my many weel kent facts and figures. By the end of the week, it was an echo chamber of carers acknowledging and empathising with each other, nothing being achieved than some real home truths being told. I salute everyone who contributed, I wish it had trended. I’m not surprised in the least that it didn’t. History will harshly judge how we are supported, but that’s of scant comfort now.
To counter the huge feeling of negativity brought on by last week, I thought I’d do a roll call of goodness. It’s by no means comprehensive, but I want to remember and acknowledge as many sources of support for the Bold Joff and Team Fisher over the years as I can….
Mrs Freitag ( Physio Sick Kids Glasgow ) Dr John Dudgeon ( Paed ophthalmology surgeon) Dr Charles Diaper ( Paed ophthalmologist) The Eye Infirmary Glasgow for contact lenses. Linda Scott ( Health Visitor).Jonathan Caddy ( Peripatetic teacher for the Blind ) Judith Binney ( Physio ) also Occupational Therapist and Speech and Language Therapists whose names I forget, Ann Ingram and Irene Stewart and the Ladybird Pre-School Special Needs Playgroup and committee members, GP’s Dr MacKenzie and Dr Ian White, Crossroads Elgin, Aberlour Children’s Trust ( Alba Place in Elgin ) Kevin Buckle ( DJ and fundraiser) Dr Hutchinson ( Ophthalmology Aberdeen Sick Kids ) Dr Charles Auchterlonie ( Metabolics ) Genetic Team at Aberdeen Sick Kids, The Raeden Centre. Mr McPherson Optician, Robert Henryson ASN school ( Lynebank, Dunfermline, which later changed premises to Calaiswood ASN school, Duloch, Dunfermline) – there are literally hundreds of people associated with Robert Henryson/ Calaiswood, honourable mention to head teacher Maureen Lorimer,
Dr Tom Scott, (school paediatrician) Fife Bus and Escorts, the many drs at Sick Kids Edinburgh, Mr Brown, Dr McLelland (neurology) Dr Barr, Dr Bath, Dr Schwann, Dr FitzPatrick and Dr Couzens (Metabolics) and the East Scotland support team, Dr Fraser Munro (paed surgeon) Dr Robert Humphries and Mr Nick Shortt (Orthopaedics), Dr Victoria Cook (Maxillo Facial surgeon), Dr Mary Porteous (Genetics), Dr Brian Fleck, Dr Andrew Blaikie and Dr Shona Sutherland (Ophthalmologists), VIS Scotland, Fife Society for the Blind, Mr Pattinson (Optician), Astley Ainsley Hospital, Lynebank Hospital and Etc wheelchair services, Mr Ramsay Wallace (orthotics) Mr Bob Walley (clinical psychologist) Helen Downie (educational psychology) Mr Charles Ogilvie and associates, (Legal Guardianship team), Dr Jane Gibson (Rheumatology), Professor Turner (Renal) Mr John Toland, (epilepsy specialist nurse), PAMIS, Contact A Family, Aberlour Child Trust (Lochwood Park short break respite) Crossroads Scotland in Dunfermline, InControl Scotland, Fife Council building services, Ms Pauline Miller (Continence Service), Leonard Cheshire Disability day service (Rosyth) Helen Lynch Social Worker, the Lowe Syndrome Association and Lowe Syndrome Trust (UK) all my folkie pals who ran 5 charity evenings for the LSA, Dr Helen Marsden GP, Dr Robert Nussbaum Lowe Syndrome researcher par excellence, Dr Larry Charnas, (neurology and general answerer of daft questions) Dr Richard Lewis (Ophthalmologist extraordinaire), Dr Brewster (renal), Dr Philip Zietler (endrocrinology), Dr Olivia Schofield, Dr Sheena Allan (dermatology), Bellyeoman Surgery and the Coop Pharmacy in Douglas Street – the latter two being consistently epic beyond description…
I will have forgotten loads, there have been SO many people who have been part of our journey. They say it takes a village to raise a child, and if your child has complex needs…. If you don’t see your name, it’s my memory, not your impact that’s at fault.
This will be a frequently visited page as I need to remind myself of the good folks in life, or I fondly remember another name.
As @RobertFlorence says, “Love will win”.