I haven’t had a good rant for a while. There are so many issues bubbling at the moment. I just need to blaahhhhh everything to get it off my chest. There are so many little issues, I don’t know where to start.
I’m used to having to fight for support and services. Its been par for the course over the past 11 years. I should be used to that fight leading to feeling like a terrible parent or a nuisance for asking for support. George and Faye are on the “high functioning” end of the scale. Therefore, we always feel we are time wasting asking for help, when so many others have it much harder.
There is also guilt that we are being selfish, asking for support for ourselves when the reason the children are showing severe challenging behaviour is because they are in such a confused, desperate place themselves. They are the ones that need help, why are we complaining when it is far harder for them to process and understand?
The longer the pandemic goes on for, the worse the behaviour we are dealing with at home gets. We have been on our knees desperate for support many times over recent months.
There is no provision for support bubbles for two parent families with disabled children or adults. Support bubbles for disabled people only apply if the disabled person is under 5 or they are only other adult in the house. Not all disabled or vulnerable children are in school so there is no external support at all for some families.
We desperately need to have the needs of families like ours recognised. Yes, I have my husband but aside from the fact he is working, sometimes you just need outside support; Both for the person you are caring for and for yourself. It is easier to navigate the situation when you can take a step back from it.
Even when lockdown is lifted the restrictions on mixing households are likely to leave us in this situation for many more months to come.
Vaccines for Carers
We did have some good news in December when unpaid carers were added to the vaccine schedule. This puts unpaid carers in priority 6. This relief was short lived when it became clear this was just another stick to beat us with, the ignorance and hatred directed towards unpaid carers after this announcement has been shocking.
More shocking, has been the response from some GPs; medical professionals who we are supposed to trust. I am hearing stories every day about carers receiving misinformation and being treated badly when contacting GP surgeries to register as a carer.
I’ve heard of GPs taking it upon themselves to police the vaccines. From my husband being told only I could be the carer as I’m the mother, to GPs deciding they won’t register any more carers as there were too many coming forward. The reason so many are coming forward is due to a lack of awareness about registering as a carer with a GP at all. Despite being a carer for over 10 years never once has anyone mentioned registering as a carer with my GP.
Below are a few examples of things Carers trying to register have been told:
.They are trying to queue jump.
.You cannot be a carer for your own child.
.You can’t register unless you receive carers allowance,
.You can only register if you care for multiple people.
Many of those carers who have been given this misinformation or been spoken to so rudely have given up trying to register. Meaning they will miss out on not only the Covid19 vaccine but they won’t receive flu jabs and access to all the other carers services GPs offer.
Being eligible for a vaccine is just another thing to add to the list of things to feel guilty about. It seems no matter what we do carers will always be made to feel like they are doing something wrong.
For information and advice for carers in the UK see Carers UK website and forum.
For up to date information on the vaccine for carers see the NHS website.
Vaccine Priority Schedule as of 30th December (extract below) can be found here
JCVI advises that the first priorities for the COVID-19 vaccination
programme should be the prevention of mortality and the maintenance
of the health and social care systems. As the risk of mortality from
COVID-19 increases with age, prioritisation is primarily based on age.
The order of priority for each group in the population corresponds with
data on the number of individuals who would need to be vaccinated to
prevent one death, estimated from UK data obtained from March to June
1 Residents in a care home for older adults and their carers
2 All those 80 years of age and over
Frontline health and social care workers
3 All those 75 years of age and over
4 All those 70 years of age and over
Clinically extremely vulnerable individuals*
5 All those 65 years of age and over
6 All individuals aged 16 years** to 64 years with underlying health
conditions which put them at higher risk of serious disease and
7 All those 60 years of age and over
8 All those 55 years of age and over
9 All those 50 years of age and over
- Clinically extremely vulnerable individuals are described here. This advice on vaccination does
not include all pregnant women or those under the age of 16 years (see above)
** The Pfizer-BioNTech vaccine is authorised in those aged 16 years and over. The AstraZeneca
vaccine is only authorised for use in those aged 18 years of age and over
*** This also includes those who are in receipt of a carer’s allowance, or those who are the main
carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill.