When I was asked to be part of a keynote presentation with our C4CC partner Carers UK to senior civil servants at the Department of Health, I was naturally delighted.
It was an important opportunity to lobby on behalf of the army of unpaid carers, who are so often forgotten when it comes to government policy.
C4CC has been working closely with Carers UK, which has been supporting carers for over 50 years and has had a major influence with successive governments. I was accompanied by Emily Holtzhausen, its Director of Policy and Public Affairs, for the meeting.
There were 16 people in the room, but we were linked by video conferencing to officials in Barnsley, Runcorn and Leeds, so I felt we had a good audience for our message.
My role was to give an insight of the life experienced as a long-time carer for my late wife Sheila. Also to give a wish list of how things can be improved in order to give these much undervalued people the opportunity to do this incredible job much better for all concerned.
It was a lengthy one, but boiled down to being better respected for the vital role we fulfil and not to be ignored and marginalised, as sadly, is so often the case.
As part of the C4CC co-production team, towards the top of this list was to be treated as an ‘expert by experience’, because we know the person we are caring for better than anyone, and are entitled to a major say in their treatment and support.
But, I was asked by the officials, if there was a single thing that you could change, what would it be?
My response: ‘To have proper training and the tools to do the job, just as everyone else in a working environment has and is entitled to by law’ !.
In a workplace, employees have every right to expect to receive the proper training and equipment to carry out the tasks they are asked to carry out.
They have every right to expect their company is compliant with health and safety regulations to protect them and others.
It is nothing short of a scandal that Carers have little or none of these safeguards and checks in place.
They are just left to get on with it, caring for a loved one with complex issues and with little or no training in how to do this safely and effectively.
For example, how do you successfully care for someone who has major suicidal issues ?, how do you care for someone in constant and uncontrollable pain if you cannot be given a proper nursing bed for them to lay in ?, how do you wash and dress them ?.
The safe use of medication is also a real problem that needs to be addressed.
The cared for person will often need a complex range of medication, but little information is supplied to the carer about its side effects.
If more than one consultant is involved there can often be a problem with communication as I know from personal experience with my wife who suffered a serious reaction to drugs she was given by one consultant that conflicted with those given by another.
It resulted in a hospital admission for two weeks during which time her condition was described as serious.
In my role as an advocate for carers, I can quote many other examples of poor practice that simply would not be allowed to happen in a workplace, but are part and parcel of their world.
Carers have a right to get the correct tools for the job, when they are required, without the delays that often occur as local authorities carry out protracted checks and their own risk assessments.
They need training how to use them correctly and to nurse the person they are caring for and finally, and importantly they should expect the necessary support to make sure their own health and wellbeing is not adversely affected in doing such stressful work.
This means regular health checks for them and more respite breaks.
My presentation was completed when I posed the following question.
If tomorrow morning, instead of coming to work as usual, you had to give up working here to care for your loved one, as they now had an illness which required 24/7 care with no breaks, holidays or time for yourselves.
That this would be for an indefinite period (probably the rest of your life), that you would get no recognition, no incentives, no support, just problem after problem, day after day, and for this you would get paid less than 40p per hour, would you leap at the chance to do this ?………….., they all shook their heads, …..I had no takers !.
But I hope that Emily and I had got our messages across and that things will change for the better because carers deserve nothing less for the vital role that they fulfil.