Carers of adults with learning disabilities seeking a return to day and respite services hold protest near Craigavon Hospital

Many have been looking after their loved ones 24/7 without a break for the past two years spoke of their frustration at the Southern Health Trust.

Tracy Gilliland who, with her husband, cares for their two severely disabled sons, aged 25 and 29. She said: “They need 24/7 care night and day. They need everything from getting dressed, getting fed, washed. They need that level of care.

“From the pandemic started we received a text on March 12, 2020 overnight to say that all services were stood down. The impact on mine and my husband’s lives and our boys lives was absolutely devastating. We felt totally abandoned by the Trust. There was hardly any information coming from them. No one knew what was happening. Here we are over two years later and we are still in the same boat.

“The impact on their lives was detrimental to their mental health. They cried every morning for their bus because obviously they don’t have the understanding to know why their bus didn’t turn up and why they weren’t seeing their friends anymore,” said Tracey, adding that the boys attended a day centre in Lurgan.

“Here we are two years later and we are saying to the Trust, where is our five days day care with transport and our normal respite.”

Tracy said feedback from an MLA who put questions to the health minister on this issue revealed that on March 27 a pre pandemic level of day care and respite services must return. “We have heard nothing. There is not a peep from this Trust, not a word. Nothing have we heard about the return of our services,” said Mrs Gilliland. “We are here today (Monday) to say we have had more than enough. We have been more than patient with this Trust and to get nothing from them in return.”

She said she asked the Trust what guidelines it is following and received the NI Direct guidelines then she was told it was the hospital’s (Craigavon) infection control guidelines and finally it was the care home guidelines.

Tracy says that the current situation is that if someone on a bus tests positive for covid then all on the bus have to isolate for 10 days.

She said before the pandemic there was a £12m underspend in Lurgan Disability Services within the Southern Health Trust. We discovered that in the last two years there is also a £4.2m underspend.

Tracy said: “We are all asking for our five days day care back with transport and our regular respite. Where is all this money going to and why are they not giving us our services back?

“They are very quick to say they are protecting the extremely vulnerable but our children are not extremely vulnerable and the majority of us did not receive the shielding letters. So they can’t continue to use ‘extremely vulnerable’.

Francis (Betty) Frizell from Annaghmore said her daughter Jan (51) has found the pandemic very hard. “All her services were closed down. Jan had difficulty in understanding why she had to stay indoors and why everything was so restricted and why she couldn’t go to her classes. They were very important to her. I couldn’t speak highly enough about the girls who run the classes. Jan had a period of time where I could say she was depressed. But we got her through it,” said Betty who said she would like to see the Trust be more accommodating and accessible.

A spokesperson for the Southern Health Trust said: “Senior Trust staff contacted the organiser of the protest on Friday, 11th March offering a face-to-face meeting with senior staff on Monday, 14th March, in Trust headquarters.

“The organiser later advised they were unable to attend this planned meeting but did ask The Trust to reschedule.

“The Trust remains more than willing to meet key representatives of those involved in the protest at a suitable date / time.

“The Trust did not prevent a protest from taking place outside Trust headquarters.

“We recognise the impact the pandemic has had on our service users and carers. Our Staff are currently reviewing risk assessments for each facility and service users and will appreciate the support of carers in trying to safely resume more services.”

Responding to claims of a £12m underspend on disability services, a Trust spokesperson said: “The total annual budget for adults with learning disabilities is circa £62m and increased funding has been made available in recent years for the Covid-19 pandemic. Last year, this budget was underspent by around £4.2m (approximately 7% of the total). This underspend does not impact on the quality and range of care and support which people with learning disabilities receive in our Trust. Whilst it isn’t always possible to spend the full amount allocated to adults with learning disabilities within a single financial year; this money is always ‘ring-fenced’ and stays within the budget for adults with learning disability and is not used for any other purpose. There are many reasons for the underspend including the significant time involved in securing specialist accommodation for clients with complex needs and in recruiting specialist learning disability staff.”

Regarding the return of care services, a spokesperson said: “The Trust are working with stakeholders including the Department of Health, Health and Social Care Board, Public Health Authority, and carers to incrementally rebuild services towards pre-pandemic levels.

“Services continue to be provided in line with Public Health Control guidelines and services continue to be commissioned from the Independent Sector and community and Voluntary Sector.”

Responding to the carers issues regarding covid restrictions, a Trust spokesperson said: “The carers also said that their children are not clinically vulnerable and the majority did not receive shielding letters but that the Trust is using this ‘as an excuse’ to restrict the service.

“The Southern Trust consistently apply regionally agreed guidelines by the Public Health Agency and Department of Health.

“Guidance on nidirect website recommends if you are a close contact of a person with COVID 19 you should minimise contact with those known to be at higher risk of severe illness if they contract COVID 19

“In day care a large number of service users are considered at higher risk of severe illness if they contract COVID19 and not just those who are considered clinically extremely vulnerable .

“Regretfully persons with a learning disability appear to be at higher risk of severe illness and outcomes as suggested in the Department of Health report, Deaths of people identified as having learning disabilities with COVID 19 in

“England in the spring of 2020 which examined data from the English Learning Disabilities Mortality Review (LeDeR) and NHS England’s COVID 19 Patient Notification System (CPNS) which records deaths in hospital settings.”

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