My name is Jill Pay, I’m a trainer with Not a Care in the World and I have a long experience of caring for my youngest daughter, whose traumatic birth left her with profound and multiple disabilities. For more than 20 years I was her main carer, until she went into residential care where she is very well looked after and very happy.
Right from the beginning of my daughter's life I found it a real challenge to get the appropriate services and support that we needed. At the time I had three children under five. When I look back, it's no wonder
I was so exhausted. When needing practical help and support and being offered a "Peripatetic Social Worker" who complained that I didn't want to "sit down and discuss family dynamics" with her ... I felt myself on a downward spiral.
A small breakthrough came when I joined a small group of fellow parent-carers of disabled children. We gave each other support and strength enough to start campaigning for better services. Out of this campaigning came the dedicated Disabled Children's Team in Camden - previously we were beholden to generic services whose knowledge and experience was pitiful. My first Social Worker actually said that she expected to learn more from me than I her!
As the years went by, I realised that whilst I was continuing to battle for the support we all needed as a family and faced many instances where I was having to dig deep and assert myself, I was eloquent and assertive enough to be able to do that. At the same time, I realised that not everyone in my situation had those abilities and were therefore likely not to be receiving anywhere near the support they needed.
During her teenage years, my daughter was at her specialist school and I began to think about the future. My older two children were making their way in the world. At the age of 19 she went to a residential college - this would be for three years, with her coming home every 6 weeks or so for breaks and college holidays. I communicated to Social Services (now adults services) that once my daughter completed college, I would no longer consider myself to be her carer and that alternatives would need to be explored. This was well within my rights - the two most important rights that carers have are: the choice of whether or not to be a carer - with coercion to care being ILLEGAL; and the choice of how much and what specific needs the cared-for has that the carer is willing and able to take on.
Long story short - NOTHING happened on the part of Social Services, despite my regular communications to them about time passing by. After three years, it was expected that I would pick up where I left off - effectively imprisoning me in my home and jeopardising my new-found employment. THIS IS ILLEGAL. I remember actually going on holiday with my sister for a few days and not knowing what to do with the situation. Returning from holiday I went to my GP who signed me off work for two months due to stress.
After writing to higher and higher echelons within Camden Social Services, I eventually wrote to the Director of Social Services, who stepped in and said that I had grounds for serious complaint. I started the process of a complaint and was completely blown away when the complaints officer heard our story and said that he would order a forensic investigation into what had happened. This investigation threw up so many things, including at least one serious safeguarding issue which had been ignored by Social Services - THIS IS ILLEGAL. The process took a long time and out of 9 areas of serious complaint 8 were upheld and 1 was partially upheld. I claimed compensation for my time and the failures of the Social Services department and this was awarded.
Whilst I felt vindicated and accepted the compensation payment, I cannot underestimate the impact all this had on me and my family.
Knowing and asserting your rights as a carer isn't being "bolshy", "aggressive" or just plain "angry" - even though I felt and was accused of all of those things at times - it is about setting clear boundaries around your caring role, with the laws in place. The Care Act 2014 is there for:
· Protection against negative impact on all concerned
· Safeguarding from harm
· Upholding Human and Civil Rights
· Health & Well-being
· Equality of opportunity
· Prevention of breakdown in any aspect of the caring situation
· Sustainability
· Quality of life; and
· Dignity
I run various training programmes for Not a Care in the World and if you believe it’s important for carers to understand their rights then please book the ‘Know Your Rights’ training. On 26th November its Carer’s Rights day so let's get empowered to get the services that we are legally entitled to!
At Not A Care in the World resilience training we know first hand what it takes to be the super human that carers need to be. If you are a carers organisation and are interested in knowing more about our work in communication skills for carers but also in our work on unlocking creativity, building confidence and also practising self care techniques then please do get in touch. Our workshops can now all be adapted for online working meaning we can work with any carers organisation throughout the world! Our workshops are dynamic, interactive, fun, creative and empowering and are facilitated by trainers trained in communication skills, NLP, psychotherapy, breathwork, sound therapy, theatre and the law relating to social care.