A SURVEY highlighting the ‘isolating’ and ‘soul-destroying’ experience of some unpaid carers has led to renewed calls for legislation to provide additional help for those looking after loved ones.
Emotional support for carers, greater availability of homecare providers and targeted financial aid, including personalised budgets, were among the improvements called for by respondents to a survey carried out by support network Carers Jersey.
The survey results were unveiled yesterday to relevant charities, such as Autism Jersey, as well as several politicians, including Chief Minister Kristina Moore and Assistant Social Security Minister Malcolm Ferey.
Launched in September, the survey gathered 84 responses comprising 65 online and 19 paper submissions.
The results also showed that the ‘typical’ carer was aged between 46 and 55 years-old, or a pensioner, and was caring for one family member or friend who had autism (39%), a physical disability (28%) or was older (25%).
More than two-thirds of respondents (71.4%) felt ‘inadequately supported’, while a similar number (76.3%) believed the experience was ‘considerably impacting on their own health’.
A lack of financial and emotional assistance were among the challenges cited.
One anonymous carer said: ‘It is not until you are thrown into this situation that you see the issues.
‘I can’t begin to express how isolating and soul-destroying our journey has been.’
During his speech at yesterday’s event, Luke Clements, a professor of law at Leeds University who specialises in disability legislation, argued that an initial ‘recognition statute’ – acknowledging informal carers and the importance of their role – was a ‘modest’ first step the government could take with relative ease.
Mr Clements added that it would provide a foundation upon which further support could be introduced.
‘The survey is showing that a major issue is isolation, feeling lost – many of these people think that they are unique. However, once you have a recognition statute people will realise that there are actually a lot of people in that situation and the government is concerned about doing what it can. It may not have a magic wand to resolve all problems, but it is showing that it is determined to make a difference,’ he said.
Dr Margaret Bayes, chair of Carers Jersey, said the survey results emphasised ‘a need that I knew was there’.
‘It was just relentless, the amount of people who felt the same way about the desperate situation that they are in.
‘All these people felt completely unsupported, didn’t know where to go for information or anything,’ she added.
She agreed that an initial recognition statute could underpin future support for carers.
‘In a way they would get rights to information and respite and things like that, which they need, but we have go to somehow put in place the means that we can get information to them,’ she added.
Deputy Ferey said: ‘That people feel they are being neglected or don’t have a voice – that is certainly not what we want in our society.’
However, he added that an upcoming review of long-term care in Jersey would provide a ‘good opportunity’ to consider new legislation
