Northern Ireland health trusts reviewing Direct Payment care provision policy
Families have been left devastated and struggling to provide round-the-clock care to loved ones with severe disabilities after health trusts blocked unqualified carers from providing nursing tasks they have been doing for years.
The families have said the Trusts have told them that carers paid through the Direct Payments system can no longer carry out or be trained to carry out the nursing tasks. Four of the main Health Trusts are reviewing the legislation and policies around Direct Payments on what those carers can and can't do. The Department of Health says it has not commissioned a formal review.
However, there has been a warning that unless the trusts allow carers to carry out nursing tasks, families will not be able to cope and some people will end up in full-time care.
The Centre for Independent Living says there needs to be a change in the law.
Deena Nimick, Policy and Campaign Manager at the organisation, said: "More and more people are coming forward with this same problem.
"We don't understand why it's happening. But the legislation needs to change.
"We need either emergency legislation or we need new legislation, in the same way that other parts of the UK have."
The organisation also told UTV that unless carers continue to carry out nursing tasks families won't be able to cope and patients may end up in care.
Tracey Henry's daughter Ellie has profound disabilities and is fed and medicated through a tube almost every hour of the day.
Mum Tracey had an assistant paid for by Direct Payments to help with that care, however, the Northern Trust has told her it will not allow the assistant to carry out that element of her care.
She told UTV the change means she can not leave the house now under the new arrangements.
She said: "There wouldn't even be an hour between when she gets up in the morning and she goes to bed at night when I can go out."
In a statement, the Northern Trust said: "We are in the process of reviewing Direct Payments in relation to the relevant legislation around health care tasks that can be administered under Direct Payment arrangements. We are committed to providing the highest standards of care and will continue to liaise with Ellie’s family to ensure Ellie receives the care she needs."
Michaela Hollywood requires 24-hour care.
Her Direct Payments are used to employ a team of assistants and like Ellie, she too is fed and medicated through a tube.
But Michaela said the South Eastern Trust told her they do not have any trained carer assistants to administer her medication - so she has to rely on her mother who has arthritis.
Michaela said: "Her hands are so sore from through the years of having to do it... my mummy is 72."
The South Eastern Trust said it could not comment on individual cases.
"We are currently working in partnership with our regional colleagues to agree a position on the training and delegation of nursing tasks to unqualified social care staff.
"We completely understand the challenges this may cause families, however if nursing tasks are required, family members are educated and supported by the Trust to provide this level of care.”
The Department of Health added: "Regionally, direct payments are offered by Health and Social Care Trusts in lieu of a social care package to enable a more personalised method of care provision and to allow people to live as independently as possible at home.
"Policy on direct payments is specifically designed to be person centred. The needs of service users are individually assessed and a care plan is then drawn up by the Trust.
"Individual needs may change over time and these needs will also be different to others receiving a direct payment.
"In specific, individual circumstances, if there is a particular complex need to be met which falls outside of the routine scope of a social care service, then a formal delegation process may need to be considered by the Trust. "There is no formal review underway. However, health and social care Trust teams working in this service area regularly engage with teams from other Trusts. This is common practice for many services across the HSC.
"Training arrangements for PAs (carers) are an operational matter for Trusts."
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