Parents put ‘lifeline’ care on top of the city’s agenda

Sheffield Parent Carer Forum development workers Eva Jussola (l) and Anne Snowdon (r). Picture: Andrew Roe
Sheffield Parent Carer Forum development workers Eva Jussola (l) and Anne Snowdon (r). Picture: Andrew Roe
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Families with disabled children across the city are calling on Sheffield Council to protect ‘vital lifeline’ services which they say are ‘the difference between existing and living’ in the wake of £63 million of fresh budget cuts being announced.

Sheffield Parent Carer Forum has put forward a raft of recommendations to Sheffield Council aimed at overhauling provisions for families with disabled youngsters aged from birth to 25 in an effort to reduce high levels of isolation, poor quality of life and a lack of information on services.

Ben Prescott, seven, with mum Helen Prescott, pictured at their home in Sheffield.

Ben Prescott, seven, with mum Helen Prescott, pictured at their home in Sheffield.

Parents of disabled children in Sheffield have stressed the need for its ‘vital’ short breaks service – which provides overnight respite care for families with disabled children – to be protected from cuts.

In the report, which surveyed 2,000 Sheffield families, 95 per cent of carer parents said caring had affected their wellbeing, 35 per cent said they were struggling or not coping, while 26 per cent said that they often neglected themselves and 19 per cent – one in five – had never had a day off from caring.

But 38 per cent of those struggling had never accessed a short break respite from caring service, and the majority said this was due to a lack of information being made available.

For mum Helen Prescott, aged 45, short breaks are vital.

Ben Prescott, seven, with mum Helen Prescott, pictured at their home in Sheffield. Also pictured are Ben's sisters Alice, ten, and Phoebe, seven.

Ben Prescott, seven, with mum Helen Prescott, pictured at their home in Sheffield. Also pictured are Ben's sisters Alice, ten, and Phoebe, seven.

Her son Ben, 11, has severe learning difficulties and cognitive delay, and attends a special school.

She said: “Short breaks are an absolute lifeline. It gives parents the chance to recharge but it also allows the child to have some independence, something which is not always very easy for children with disabilities.

“I think if they are cut, it’s a short-sighted, economical move.”

The Forum report found high levels of isolation among carer parents. It said just eight per cent of parents felt ‘fully included’ in wider Sheffield, while more than half of respondents said they found it ‘difficult’ or ‘impossible’ to take part in everyday activities as a family.

Helen agrees with the finding of the report about isolation and the lack of leisure activities for disabled children.

She said: “It isn’t easy, when you are out in public and people make comments or give you looks because of a child’s behaviour – it’s something a lot of parents with disabled children experience and you have to have a thick skin.

“Not everyone does and I think some parents will just stay indoors instead.

“Leisure opportunities are very difficult to access. For children with complex special needs, there’s not a lot out there.

“Society needs to be able to celebrate diversity a bit more and have a bit more tolerance of people.”

Marion Hutchinson, 50, from Chapeltown, has an autistic son aged 16. She agrees isolation is an issue for parents in the city.

“You do become quite isolated and insular isn’t the right word, but you do become quite into your own world because that’s how you cope.

“From my experience, my son is autistic and he doesn’t function in the wider world, he’s not socially aware, and he only eats five foods.

“So social activities like going to a restaurant or going to a café we can’t really do, so we stopped doing it, and people stopped sending us invites. But we know that when we are at home, we have everything we need in place. And when your child is picked up by a bus you don’t get that interaction at the school gates with other parents.”

So how should isolation be tackled?

“More groups for families, perhaps in more localised areas. Some support groups run in the evenings and some in the daytime,” said Marion.

“Perhaps if there were regular groups run in schools, sessions which gave out information where parents could chat to one another?”

In its report, the Forum called on Sheffield Council to both protect short breaks from cuts – despite having to find £63 million of savings, provide better information about services and tackle high isolation.

The Forum’s Eva Juusola said: “I think we need to make sure that these vulnerable families continue to get services that are absolute lifelines for them. That these services are not cut.

“Two-thirds of people in Sheffield we surveyed said the impact to cuts to short breaks would be ‘significant’ or ‘devastating’.

“Having a disabled child can be a very isolating experience. It can feel like nobody understands what you are going through. Parents often find that talking to other parents in a similar situation makes them feel less isolated – which is why parent support groups are so important.

“Forty-four per cent of the parents in our study had given up work to cope with their caring responsibilities. These parents not only miss out on social contacts with colleagues, they also have less money to take part in leisure activities. This can have a huge impact on their self-esteem, and can make them feel that they are not really part of society.”

But Ms Juusola pointed out some service provisions are lacking in Sheffield, contributing to issues in the city.

She said: “We appreciate that Sheffield Clinical Commissioning group recently invested an additional £200,000 to reduce waiting times for children’s speech and language therapy services. Unfortunately, that’s not going to be enough to bring service capacity up to what it should be.

“Sheffield’s speech and language workforce is around 40 per cent smaller than the national average.

“More than half of the parents in our study said their child had problems with sleeping. Long-term sleep deprivation has a profound effect on families. It affects mental and physical health, impacts on children’s behaviour and attainment at school, puts a strain on relationships and can even lead to parents having to give up work.

“Yet there is no specialist sleep support service in Sheffield.

“We do understand that it’s a difficult financial situation and we want to work with the council. We don’t just want to bash them over the head. We want to work together to make services better, not just criticise.

“But I think there’s an issue with several services that operate for families with children with disabilities. For example, speech and language therapy and mental health. Parents for years have been saying that these services haven’t got enough capacity.

“We would want to make sure that every penny that is spent is spent well. We can’t afford to spend money on services that don’t really meet need.

“An issue is that as services are slashed more and more, the temptation for the council is to focus on services they have to provide by law, statutory services, and that comes at the expense of things like early intervention.

“Our message to the council is – keep investing.”

Sheffield Coun Jackie Drayton, cabinet member for children, young people and families, said: “We have been consulting with parents and carers on short breaks and respite care services for children and young people with disabilities.

“We are holding further meetings and focus groups over the next few months to report back to parents and carers on the findings so far, to inform them of our proposals for the future and to hear their views on them. Our proposals reflect the views we heard during the initial consultation about our services, and address the budget savings needed in this area.

“The proposals will mean changes to some aspects of our services but we are continuing consultation with parents and carers to make sure the changes reflect their needs in the most cost effective ways.

“One of the issues that came up during the consultation process was the need for clear information about services to be available to parents and carers, in all sorts of ways.

“Access to information is a key element of the new Children and Families Act and lots of work is going on to develop existing services and new ideas to communicate with parents and carers.

“We value the role of the Parent Carer Forum, in helping us understand the needs of families with disabled children. The findings and recommendations from the State of Sheffield study reinforce some of the views we heard at our consultation sessions and will form part of our ongoing review.”

Report statistics

Wellbeing

95 per cent of parent carers said caring had affected their wellbeing, sleep and relationships.

Transition from child to adult

96 per cent said the move from services was ‘difficult’ or ‘very difficult’.

Isolation

92 per cent did not feel fully included in wider Sheffield.

Lack of information

57 per cent of families who were not accessing short breaks services said this was due to a lack of information.

Bullying at school

63 per cent of pupils with disabilities or additional needs in mainstream schools suffered bullying.

Poor service capacity

74 per cent of respondents felt services including educational psychology, autism and speech and language therapy services did not have capacity to meet need.