From a letter send to the Director General of the Irish Health Service (HSE) and others
I know you have a lot of issues to deal with in the HSE and the concerns of a few hundred thousand family carers are not up there with the trolley count and the cancer survival rates, but please can I draw your attention to the health costs of lack of respite.
I’m off for a scope again in a couple of weeks, thanks to one of my medical conditions deteriorating, exacerbated by stress.
And you know what caused most of the stress?
Having to fight every day to get even basic services and support from the Department of Health and Education for two of my children.
I will be having the scope with no sedation as I have NO RESPITE and will have to look after my children when they get home from adult services and school.
It will be horrible and a challenge, but I’ve done it before.
But I may also need an operation. WITH A SIX WEEK RECOVERY TIME. And that’s if they don’t find anything sinister.
How is that going to work?
My severely disabled daughter needs two fully trained staff to look after her for health and safety reasons (though it’s okay for me to manage alone) and then there’s everything everything else I do too. Almost entirely on my own as I’m a lone parent.
If the dates suit, I suppose I would have to pay for some 24 hour home cover, if all I need is a short hospital stay. But what about after that? Both my recovery and the health and safety of my children will be at risk. Yet no one seems to care.
Do you think you can just send my daughter to a strange respite house where she knows no one, and no one knows her needs? When she hasn’t stayed away from home for years? When her last two experiences of respite left her traumatised?
If it all goes horribly wrong, will everyone just wring their hands and describe it as a terrible tragedy and then go about their daily lives as before?
I have been looking at options for respite for several years in anticipation of something like this happening, but without success so far. My attempts to make contact with anyone who might be able to put a service in place have been mostly met with indifference or just simply ignored.
Luckily the lack of respite has not become critical until now. And it’s not been my number one priority. Battling to get services for my teen and my severely disabled 20 year old has taken up most of my time and energy.
And there are similar stories all over the country as most families now take on most of the caring responsibilities for their loved ones with special needs. So these situations are going to arise more and more often. I have Facebook friends right now who say they can’t have operations because they have no respite.
There is nothing in place for my children. No plan. All the work I have done to give them a good life could be undone by lack of planning by the Departments of Health and Education and their lack of interest and concern for the future of my children.
Hopefully I may not need an operation yet, but respite and long term planning needs to be put in place NOW, so that my children are happy and familiar with it, for when an emergency does happen. Which it surely will.
All I’m asking for is someone to contact me and help me to make this happen. Is that really too much to ask?
A very tired and worried special needs mum.