Adults with learning difficulties failed by mental health provision

The mother of a young autistic Derry man has highlighted what she described as her family’s “continuous negative experience” with the Western Health and Social Care Trust’s (WHSCT) learning disability services.

Speaking to Derry Now, Cathy Nelis, whose son, Fiachra Kearney (23) also has a learning disability and a co-occurring mental disorder, said: “Based on our experience as a family, there is no cohesive system in the Western Trust to support adults with learning disabilities in mental distress.

“It is clear, no effective crisis intervention process is available to support my son, our family, and others living with similar profound challenges and associated circumstances.

Fiachra with his dad, Declan and mum, Cathy Nelis.

“Learning disability services appear to operate in a silo, disconnected from other services. There is no co-ordination or communication with other professionals, including social workers and family support workers, within the overall disability care system,” she said.

According to Cathy, Fiachra is a “lovely young fella, who is quite bright”.

“However, Fiachra has cognitive dysfunction. He has memory weakness, and he has a processing disorder, which means he can’t process information at the same speed most of us can, and this makes him extremely anxious.

“In the last few years, we have also noticed these cycles with Fiachra, which resemble bipolar disorder. At times he is able to manage, although not independently. Fiachra is never going to have that level of independence.

Fiachra and Declan.

“Then he has real lows, where he becomes really depressed, very suicidal and there is a lot of serious self-harming.

“These are effectively episodic mental health crises which can last for sustained periods of time. The intervals between the crisis periods and more stable phases has narrowed. This is what we have been living with now for the last few years.

“The most recent episode, which occurred just before Easter, was a tipping point. Fiachra drank bleach. We rang an ambulance and he was taken to Altnagelvin Hospital’s Emergency Department (ED) just after midnight.

“During the previous two weeks he had absconded on four occasions; called the PSNI to our home twice and an ambulance once; several instances of verbal and physical aggression towards us; self starvation and presentation of extreme hypochondria,” said Cathy.

Cathy said she and her husband, Declan, had been told repeatedly, their only hope of securing crisis intervention when these situations arise was by bringing Fiachra to the ED.

“We have done this several times in recent months and found the experience to be very traumatic,” said Cathy.

“On this last occasion, the crisis team in ED met us at 8.30 am. It then had to wait four hours before receiving any communication back from the Lakeview bed manager. The team was notified that Fiachra could not be admitted.”

Lakeview Assessment and Treatment Hospital, which is situated in Gransha Park in the Waterside area of the city, provides 10 in-patient assessment and treatment beds.

“When Declan spoke to the bed manager in Lakeview, she told him Fiachra would have to spend a second night in ED because she could not admit him,” said Cathy.

“This was an untenable situation, however it was characteristic of our continuous negative experience with learning disability services in this Trust, notwithstanding the professionalism and genuine empathy of Fiachra’s social work and family support team members.

“Fiachra has been abjectly failed by the existing learning disability services, and the total absence of any effective crisis intervention strategy in the Western Trust to support our family,” she added.

Clearly passionate, Cathy said it was obvious, from her family’s experience, there needed to be a separate, dedicated mental health service for adults with learning disabilities.

She added: “The protocol of every time there is a crisis, and it could be every month or possibly every fortnight for us, we have to go and present Fiachra at the ED, is cruel and indefensible.

“After being transferred from ED to ACU in Altnagelvin, Fiachra was admitted to Grangewood. He remained there from April 6 to 19, and was ultimately discharged because he told Clinical Management he wished to come home.

“No new Clinical diagnosis of Fiachra’s condition was carried out. He returned home without 90% of his personal belongings and no explanation for their disappearance has been provided to date.

“We knew it was only a matter of time before the next mental health crisis would be triggered. Now, less than four weeks after Fiachra’s discharge and at this point in time we are living through another extremely challenging situation; having to contend with extreme obsessive behaviour, which means we have to lock doors, hide keys and medication. Fiachra cannot be left unsupervised,” said Cathy.

Cathy was adamant the Western Trust required “dedicated, appropriate, bespoke mental health provision for adults with learning disabilities”.

She added: “This needs to be designed and developed in partnership with families who have lived experience. That is what I would be calling for.”

Cathy said what “scared” her about Fiachra’s situation was the fact she and Declan would consider themselves “relatively tuned in”.

She added: “I work in community mental health and Declan is an elected representative. Yet, if this is the response that we are getting, despite our expressed opposition and our expressed frustration about having to go to Altnagelvin’s ED first, every single time Fiachra has an episode, how are other families being treated?

“That really scares me to be honest, particularly when it is adults with learning disabilities. Adults with learning disabilities are reliant on parents and carers to be their voice. And yet a lot of them might not have that. A lot of their parents or carers might not have that capacity. They might well be older people,  worn down caring because, believe me, caring responsibilities wear you down, never mind being expected to turn up at ED time and time again.

“As a result of this most recent experience, we are seeking answers to a series of questions put to Trust Management on April 20l, including a request for the current Clinical diagnosis of Fiachra’s presenting history and an assessment of the effectiveness of his prescribed medication.

“We have also asked what actions we, his family, should be taking during further episodic crises, such as the existing situation. We want to know if the official policy direction of the Western Trust is for families like ours to report to ED at Altnagelvin hospital  in these circumstances. We have yet to receive answers to these and other questions,” said Cathy.

“If Fiachra is already under the care of Lakeview, why can’t he go straight there? Why does Lakeview not have its own emergency crisis team?” asked Cathy.

“For adults with learning disabilities, going to ED can be very, very overwhelming and it can be really traumatic, especially for families having to go there every time something happens.

“You have to start from scratch. Re-tell your entire story to somebody new and that is so, so exhausting, never mind traumatic and frustrating, and everything that comes with it; and it really wears you into the ground,” said Cathy.

“I don’t understand why the system is set up this way. Is Lakeview saying it only operates a nine to five service? If someone is in crisis, even between the hours of nine to five, we still have to go to ED,” she added.

A spokesperson for the Western Health and Social Care Trust (Western Trust) told Derry News: “The Western Trust Adult Mental Health Service works in collaboration with service users and in partnership with family and carers, general practice, community and voluntary providers to ensure that the service user receives the most appropriate treatment in a timely manner, by the right people in a suitable location.

“These concerns have been shared with the relevant Clinical teams, however due to patient/client confidentiality we would not be responding to individual cases.

“If a patient/client or their relative has any issue in relation to their treatment or the service they have received, we would encourage them to raise these issues through the Trust's comments and complaints system - the Patients' Advocate Office.

“The Patients' Advocate Office can be contacted on (028) 7161 1226. All complaints received are investigated promptly and dealt with in line with Trust policies which includes monitoring of themes to complaints and learning from them.  A response is issued to the person(s) who raised the complaint(s).”