In the first story of this series, we shared HL’s case, after the European Court of Justice’s ruling the government realised they could not just patch up the old rules and instead needed a whole new way of thinking. So, in 2005 the Mental Capacity Act was born. Where the old laws were about taking power away from people to make decisions in their lives, this new law was centred on returning it. It’s based on five rules that changed everything for a person with a learning disability and those with mental health challenges.
- Assume I can: Just because someone has a diagnosis doesn’t mean they can’t make decisions. You have to assume the can until it’s proven they can’t.
- Help me first: You can’t say someone ‘lacks capacity’ until you’ve tried every trick in the book to help them. This could be using pictures, easy-read signs, or even just waiting until they’re dressed and have a coffee to be more alert.
- It’s okay to be quirky: The law says we all have the right to make ‘unwise decisions. If a person wanted to spend all their pension money on buying vintage records, that’s their choice! We cannot take someone's rights away because we find their choices a bit odd to us.
- Best interests: If someone truly cannot decide, for example they have advanced dementia, any decision made for them must be in their best interests, not what’s easiest for the hospital or the council.
- The gentle way: Always pick the option that restricts the person's freedoms the least.
Independent Mental Capacity Advocacy
With the introduction of the Mental Capacity Act (2005), this is where advocacy became a legal must-have and created a brand-new role: the Independent Mental Capacity Advocate (IMCA).
Imagine you’re in hospital, you don’t have any family or friends to speak on your behalf, and your doctors are deciding whether to move you into a care home forever. Before the 2005 Mental Capacity Act you might have just been moved but now, by law, your local council must call an Independent Mental Capacity Advocate. An Independent Mental Capacity Advocate isn’t a solicitor or doctor; they are professional ‘listeners’ and ‘shouters’. They get to know you, find out what makes you happy, will sit in meetings to shout up on your behalf; above all, they are your voice in that space.
Toby's story
The Mental Capacity Act wasn’t just a boring piece of legislation, it was a shift in culture to remind us that every person, regardless of their disability, has a voice; even if they don’t use words to speak.
Toby (not their real name) was a gentleman who lived what could be described as a simple life. Toby had lived in the same rented rural cottage for many years. He had lived with his mother until she passed away and then continued to live alone. He had never known his father. Toby’s rented cottage grew into disrepair as it had damp, old electric wiring and Toby collected lots of belongings which took up a lot of space in his home.
Toby worked for a local business man doing odd jobs, and in his spare time, he would drink in his local pub. Work then Pub was Toby’s daily routine and it was not uncommon for him to leave the pub and walk to his boss’s home for a lift home rather than driving under the influence of alcohol.
One night when Toby headed from the pub to his boss’s home, it was particularly cold. Toby went to the back door as usual but unfortunately, Toby’s boss was away for the night and there was no one home. Toby suffered a stroke and lay out in the cold all night until his boss arrived home the next morning and alerted emergency services.
Toby was admitted to hospital. His stroke left him with very little verbal communication and unable to retain information or make decisions. Toby had a formal capacity assessment which concluded he was unable to make a decision about his care and support needs including future accommodation. Toby had no family or friends who were appropriate to consult with in relation to this decision, so the social worker referred Toby to People First for an Independent Mental Capacity Advocate (IMCA). The role of the advocate was to gather Toby’s feelings and wishes to support the social worker to make a decision as to where Toby could receive the level of care and support he now required.
There were three options given to his Advocate:
- Toby to return home
- Toby to move to a care home in his village
- Toby to move to a care home in the nearby town.
The Advocate met with Toby on many occasions. The Independent Mental Capacity Advocate took photos of his home and the care homes and a map of where they were all located and spent time with Toby’s boss and spoke to the landlord of his local pub to get to know Toby more.
Through this work, our Advocate was able to learn that for Toby that it was important to him that he stayed in his village. He loved hunting and agriculture, including farm animals and tractors. This was confirmed by his boss and the pub landlord. On reviewing Toby’s needs assessment and speaking to home care agencies, it was evident that the level of care that Toby needed could not be provided in his home due to the state of disrepair his home was in. But through working with Toby, the Advocate was able to understand that there were many belongings that were important to Toby including photos of his mother, school reports and paintings that he had done years previously.
The Advocate produced a report of her work and attended a best interest meeting with the social worker to represent her findings. The social worker reviewed the Advocate’s findings and decided that Toby could move to the care home in his village and he would be given support to access his local pub.
The social worker and Toby’s Advocate visited his home and collected personal belongings for him to make his room more homely. Toby settled well into the care home however his heath never recovered.
Six months later, Toby passed away. Using evidence gathered in the Independent Mental Capacity Advocate’s report, the social worker was able to arrange for Toby to be transported from the Funeral home to his funeral in a trailer being pulled by a tractor through his village.
Toby’s story, HL’s story and million’s of others remind us that the Mental Capacity Act wasn’t just a boring piece of legislation, it was a shift in culture to remind us that every person, regardless of their disability, has a voice; even if they don’t use words to speak.