Up Close examines why families are calling for reform of a crucial care option

By Carol Jordan - the full programme is on ITVX

When I was first put in touch with Tracey Henry in June of this year, I struggled to get my head around the issue of direct payments.

Tracey told me about her despair at why her carers under the system had been told that they could no longer carry out health tasks.

What ensued was an investigation into a part of the health and social care system which families say is riddled with bureaucracy and difficult to navigate but most importantly, is so essential for helping to meet the basic human rights of its recipients and their families.

Direct payments can be applied for if you are or care for someone with additional or complex needs. The system works across both Children's and Adult's Services.

If you read the Direct Payment legislation it states that the payments should be used for social care needs.

But with someone with complex needs, the boundaries between what constitutes health or medical needs and social needs blur.

If you need hourly medication or feeds through a peg, then anyone who cares for you needs to be able to manage that process so the basic human needs of nutrition and medication can be met.

For Tracey's 22-year-old daughter Ellie, she was someone who needed round the clock care. Tracey gave up her job as a teacher and along with Ellie's younger sister Kayla, they managed most of the time.

Ellie often wakes several times a night and cannot even turn without someone helping. For Tracey and Kayla that means sleepless nights.

The only respite Tracey had been receiving was through a Direct Care package which was agreed with the Northern Trust in 2022 which meant a carer could come in and give Tracey a chance to eat, sleep, take a break.

So for Tracey to be told that her carers could no longer carry out healthcare tasks was devastating. With the level of care that Ellie needed, it meant that Tracey was the only one who could manage Ellie's peg tube so effectively the little respite she got....was gone.

And for Ellie, any opportunity she had to go out without her parent like any other young woman was also gone.

When I approached the Northern Trust, in a statement from last June, it told me that it was looking at the legislation around Direct Payments.

And it's that legislation which Tracey wants changed. She has started a petition which has garnered almost 20,000 signatures to date.

She argues it's the only way that confusion around Direct Payments and who is entitled to what can be cleared up. It's a call which is supported by experts.

Deena Nimick from the Centre For Independent Living which helps people navigate the Direct Payment system agrees that the law is unclear.

She says that from late last year she has seen an update in calls from people from across Northern Ireland who also claim their carers have been stopped from undertaking health care tasks.

Nuala Toman from Disability Action agrees. She argues that the system is confusing and there needs to be a level playing field.

Caroline Wheeler is mum to Lee. Lee is 40 years old and is the only person to live with Double/Triple Mosaic Syndrome.

He's epileptic, diabetic, has learning difficulties amongst other conditions but remarkably, he lives independently supported by a 24/7 care package including Caroline, who is paid as one of his carers under Direct Payments.

Due to the limit on DP carers undertaking health care tasks, we witness how she has to clock off as a carer to administer Lee's insulin.

She is back in mum mode and then clocks on as his carer again once she's finished.

She says the problem lies with decision makers who don't know what life is like as a carer and what that entails. She says accessing services is a constant battle and when one ends, another begins.

When asked about Direct Payment legislation, the Department of Health said that it was working with trusts to address the issues.

It said it has started a Start and Finish force to look at the system and apologises for any disruption in services. Crucially, it said it had also received its own legal advice.

The Trusts run the Direct Payments system. Their responses show the disparity between the trusts' approach.

When approached about Tracey's case, the Northern Trust told Up Close that it had received legal guidance in May 2022 which led it to conclude that carers under Direct Payments cannot undertake healthcare or nursing tasks.

However, Tracey wasn't informed about changes to her package until April of this year, almost two years later.

When approached by Up Close the other four HSC Trusts said:

South Eastern Health TrustThe South Eastern Trust say their policy has not changed, however some direct payment carers may carry out tasks which could be described as nursing or healthcare in which case appropriate training is provided.

Belfast TrustThe Belfast Trust also say their policy on direct payment carers hasn’t changed and that on occasion some carers may carry out nursing and healthcare tasks for which they would provide appropriate training.

Western TrustThe Western Trust outlined a number of nursing tasks that could be undertaken by Direct Payment carers with appropriate training and monitoring. The Trust said it had taken a range of advice - including legal advice - where appropriate.

Southern TrustThe Southern Trust’s position remains that Direct Payments should only be used for social care tasks. A situation may arise, of a carer who has decided to train up their personal assistant to manage specific healthcare tasks. When this situation emerges, a multi-disciplinary approach will be taken in partnership with the individual and their Parent/Carer to replace this with Trust arranged support.

As for the families at the centre of this, there are no easy answers. They need Direct Payment carers to help provide the best level of care for their loved ones.

And by doing that they save the health system and all tax-payers the cost of residential care...

They continue to call for reform... They continue to fight for care.

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