Filmed on my phone, in my own words. Edited by Ric Rawlings Together for Short Lives
From tomorrow, spend the week with Freya and I in our exclusive 'week in our life' video diary. A glimpse into the life of me caring for Freya and the support we receive from Rachel House Children's Hospice
I have been working with Together For Short Lives in a voluntary capacity to produce a 'week in our life' feature which will air across their social channels from 15th May, these videos give a glimpse into my life, and the life of caring for a seriously ill child, as well as the vital support we receive from Children's Hospices Across Scotland.
Episodes 3 and 6 contain scenes which some viewers may find distressing
I have stopped donations coming to Freya and diverted them to the Together for Short support fund for families with similar circumstances to mine.
Please follow the link if you wish to donate:
I am Carolynne Hunter, Freya’s Mum. I care for Freya at home with the support of a Team of NHS Complex Care Nurses and Self Directed Support Staff 24/7. Freya is my youngest of 4 children. Freya has the most Beautiful Smile enriching our lives everyday
Despite campaigning publicly for the past 7 months about how detrimental the increase in energy prices are for my 12 year old Daughter Freya living with severe complex health needs who requires a high level of nursing support and equipment at home, the UK and Scottish Government have failed to acknowledge my pleas for appropriate support to be put in place to prevent a Healthcare Crisis for my family.
I have no way of reducing the usage of energy in our home. My older daughter and I have historically lived in fuel poverty to keep Freya safe and comfortable making sure all her medical needs are being met whilst allowing me to keep my bills as low as possible. We dread every winter in our cold home with an energy efficiency rating of D.
Below is a forecast of my DD amount prior to the Liz Truss Price Cap Freeze of £2500 however with the recent announcement from Jeremy Hunt next April my annual cost for Electric & Gas as forecasted by an energy advisor at Clacks Council will most likely be around £17,000.
In March I was paying £225 a month, I struggled to pay that. Since April I have had £400 a month taken for energy costs. As of 20th Oct £505 is what I am being forced to pay. Help!
I also have deep concerns about the latest news regarding energy outages lasting up to 3 hours betweem 4pm and 7pm during January and February the coldest and darkest months of the year. Freya has constant routine medical interventions requiring eqiupment operated by electricity during the hours between 3-7 not to mention the neccessity of heat and light. Health & Social Care & Govt Public Health have not provided me with a contingency plan to keep Freya safe at home should these power outages happen.
A generator may be an option of making sure essential medical equipment can be powered during these outages. I asked Freya’s care package provider Forth Valley Health Board & Clacks Council if they would supply us with a Generator they said I would have to cover the cost myself, so please donate and share. Thank you.