Litany of pain: No access to toilets... exhausted to the point of collapsing ...stuck in a home

Patients and other people using the health services can complain or make a comment via a Hse system that operates through letters, emails or personal contact.

Letters relating to the disability sector, released under the Freedom of information act, reveal the quiet desperation of the writers. all identities were fully redacted, with details of places or names removed before release.

NO TOILET FACILITIES FOR MY CHILD

One mother of two children in wheelchairs wrote on August 15, last year, asking for transport. She said the centre attended by her son did not have a suitable toilet.

She wrote: ‘In order for my son to get to the centre, I need to help push as he sometimes gets stuck. One time he got stuck at the edge of a path along the motorway. I couldn’t lift him. Luckily two men and a woman got out of their cars and helped us.’ She also wrote to the HSE prior to her other child starting at the centre. She told them: ‘They said I should walk there too. I keep asking for help but nobody will help. I was told to go to my local TD. I’m writing to you in the hope that you can please help me help my children. Help me to get transport.’

She explained that when her child needs the bathroom, she collects him and returns him to the centre.

Poignantly, she added: ‘Sometimes he will say that he will not go in because he knows I am so tired and unwell or if he thinks he needs to poo.’ She explained that she had been admitted to hospital but discharged herself, and that she pays for the taxis to hospital appointments, sometimes with the help of a local charity.

EXHAUSTED MOTHER

Another mother with two children living with disabilities emailed asking for respite care. On August 20, last year, she wrote: ‘I am so, so tired and my health is not so good. Yesterday I was so exhausted that my legs went from under me and I fell down the stairs. I banged my head on the stairs and my arm is bruised. It took me so long to get up. I think they were frightened.’

She explained that her sons require 24-hour care. At the time of writing, they did not appear to have assistance. The email is marked ‘Follow-Up Completed’.

PRAISE

Another email dated July last year, praised a camp for siblings of children with disabilities. This mother wrote that her daughter was initially anxious, but added: ‘She loved the idea of meeting other children who had a sibling with special needs and it was facilitated just beautifully.’

OVERWHELMED FAMILY

A letter by the National Advocacy Service on October 18, last year, on behalf of a family with concerns about a son with a moderate intellectual disability, described the man’s elderly parents as ‘entirely overwhelmed’. It stated: ‘He has been assaulted in the community and also in his home by family members… including an incident when his mother said she over-medicated him in order that she could leave him home unsupervised. And another occasion when his mother cut him with a knife during a dispute.’

An update from October 26 said that the HSE Disability Services referred him for residential services several times over a period of years but funding was not available. The update said: ‘So the circumstances that prompted this complaint have not materially changed.’

TOO YOUNG FOR MY NURSING HOME

On January 2, a woman with disabilities emailed, saying she was put into a nursing home due to lack of home help hours even though she is under 65. The hours were curtailed last year, after 19 years of illness. The woman does not explain why. She wrote: ‘I am desperate. I feel abandoned. I am fearful of being left without adequate care or being left in a totally unsuitable care facility. Over Christmas, I had no carer. I was unable to change my clothing, to have a wash, to prepare even the most basic food for several days.’ She initially rejected a suggestion by her GP to go to hospital due to possible overcrowding in the A&E and is paying for a bed in a voluntary home. The cost of €202 a week is higher than her disability allowance. She wrote that showers take place ever nine days in the home.

The letter added: ‘If I had sufficient home support, I would not have to be a resident of a care home for the elderly. Although grateful for the care here, I am deeply saddened it had to come to this. It was/is a very distressing episode in my long history of illness.’

LOCKED INTO A HOSPICE

An email sent on May 11, last year, by a man with a terminal illness, started by praising the local HSE Sensory and Physical Team. However, the man – who is in a wheelchair and requires a ventilator at night – went on to describe a distressing respite stay at a hospice. The switch to raise his bed was broken. He wrote: ‘This caused me unnecessary distress at night as my breathing was compromised. The response to my request to swap out the controller was, “Well, six other beds have an identical fault.”’

There were no shower-chairs in the bathrooms and assistance depended on which staff member was on duty. In his email, he noted the ‘effort and hard work’ of the staff but said he never met a manager.

He raised concerns that some doors to the hospice were left open, so young residents with intellectual disabilities were free to wander into other rooms. On two occasions – including once while he was urinating – a young girl came to his open door. This caused him great distress.

He wrote: ‘Would I have been suspected of inappropriate behaviour? Where would the hospice be in terms of adhering to its policy of inappropriate behaviour?’

But at the same time, other outer doors were kept locked, so he could not freely access outdoor areas.

On querying this, he was told local youths had previously come into the hospice and stolen items from residents. Staff told him to keep his window closed, so they couldn’t enter that way. He wrote: ‘I asked the staff if the gardaí had been called. The response I received was, “The gardaí were not interested.”’