Halifax resident speaks of nine-year battle to access support over his complex needs

A Halifax resident has spoken of his nine-year battle for support to help live with his complex needs.

By Tom Scargill
Wednesday, 3rd August 2022, 2:14 pm
Updated Wednesday, 3rd August 2022, 2:15 pm

Simon Smith, 53, who lives in Hipperholme, was diagnosed with autism and ADHD (attention deficit hyperactivity disorder) in 2013.

Simon previously worked in various roles including at the Department for Work and Pensions contact centre in Halifax.

But he says he has been locked in a nine-year battle in trying to access the support he needs in order to get on with his life.

Simon Smith

"Instead of getting the help I need I've just been sent round in the formal complaints process for the last nine or ten years," he said.

"The ombudsman service says the local authority has responsibility over my care, but they haven't been able to do that because there's no commissioning of services.

"It's been identified that the fault is not just with the local authority, but the local health trust and he integrated health board, what used to be the CCG.

"But there's still no overall strategy to have the problem addressed, so I'm just stuck with no access but with high level health and social care needs to be met.

Simon Smith

"I have secondary mental health needs as a result of not having my primary needs met, but there are no services that can help with that either.

"All the organisations just signpost me somewhere else. I've just ended up on my own trying to get all the services to join up.

"My case has shown that there are gaps in the system, and others in the local area will be going through something similar.

"But I can't do this on my own, I need help."

The problem has been raised with Calderdale's two MPs Holly Lynch and Craig Whittaker, as well as NHS England and several other groups.

"There's a lot of people stuck in institutions that need to be back in the community, but until there's community services for us the problem's never going to get resolved," said Simon, who told the Courier he was discharged by the local mental health trust without being passed on to any mental health services

"There's a lot of pressure on the out-of-hours services already, you can see that with the waiting times for ambulances.

"Every head of service is aware of my case but no-one is taking ownership of it.

"Each service seems to have a conflict with the other, I'm just in the middle of it, living my life without the right help and support.

"I can't reach my potential, I can't get back into employment.

"I tried to do a foundation degree several years ago, I've got potential with the right help, I can get there, but not until all this is sorted.

"I've been told I need formal support to help with things like written submissions, for example, but the people who tell me that can't provide it."

Simon says his battle for support has had a severe impact on his mental health.

"I've had feelings of 'I've had enough' but I keep getting back up," he said.

"I feel discriminated by the services that are supposed to be helping me. It's intimidating, anxiety provoking, it's created another level of distress for me.

"It's impact my family and friends, I can't reach things in the community properly including other support and social activities and church.

"I'm trying to help others through volunteering but I'm not getting the help myself.

"The local charities I see have given me great moral support that help me forget about my complaints for an afternoon, but as soon as I get back into all this I just feel completely lost.

"I feel like I'm a small child that's been told I need lots of help and just been left on the sidelines asking where is it coming from."

Simon volunteers with several mental health and community organisations in Calderdale and says there are others in the borough suffering like he is.

"What's been identified over many years is I need somebody to co-ordinate between all the different services, a care co-ordinator sitting in the middle," he added.

"The local authority just say they can't find me somebody to do that role.

"They put the onus on me by saying they can't find someone like that, but it's not for me to determine how I should get the help I need, it's for the services to make sure they're providing that for me, and they haven't done.

"The ombudsman report on my case does say the local authority have tried to help me, but what they've done isn't adequate.

"All that's happening is, every time I reach out to the out-of-hours services, they're sending me back to the mental health services, who say I'm not in their service, goodbye. That's been going on for years.

"I'll ring 111, who try to ascertain who to send me to, but they've already said they can't help me.

"But it's not just me, I've been trying to use my experiences to help the groups I volunteer for understand the system. I'm not just sat here waiting for services, I've been trying to make a difference as well.

"I will not be only resident in Calderdale going through this. But it needs much more public awareness.

"I'd love to have a meeting with Rishi Sunak or Liz Truss about it, but I couldn't get there on my own.

"They're the people who could make a difference for everyone."

Coun Josh Fenton-Glynn, Calderdale Council’s Cabinet Member for Adult Services and Wellbeing, said: “Supporting people to live a full life and achieve their potential is always our priority.

"Whilst we wouldn’t comment on individual cases, we work hard to actively help those who require additional support. Following a Care Act Assessment, support can be provided by a care provider, or by Direct Payment where the individual can purchase the support that meets their needs.

“In some cases, this can be complex and require the involvement of other organisations. In these situations, we work closely with our health and social care partners and signpost to the relevant support as necessary.”