Advocates want homecare recipients to be able to choose type of care they want

Vulnerable homecare recipients must have explicit rights to decide on the type of care they are offered under regulations being drawn up by the Department of Health, advocates have said.

The Health Information and Quality Authority (Hiqa) is writing the first national standards for the completely unregulated sector which supports around 65,000 people over 65 to stay in their homes.

“We don’t even know how many care providers there are,” says Niamh O’Rourke, head of standards with Hiqa. “We don’t know what standards are being adhered to. We do know there are standard operating procedures when the HSE commissions a service, but there are no national regulations or standards. It is quite surprising,”

The national standards being drawn up will see providers licensed and inspected by Hiqa. The Department of Health is in parallel working on legislation that would be underpinned by the standards. Together, Ms O’Rourke says, these will ensure homecare is “person-centred and delivers what the person being cared for is actually looking for”.

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One Dublin homecare recipient, who has haemophilia, feels he is being “forced” to choose between using a hoist, which he says hurts his limbs due to the condition, or being confined to bed. Don Buckley (72), a former deputy editor at The Irish Times, also fears using the hoist, which he says is unnecessary and will hasten his decline.

He receives 24-hour homecare through the Home Instead for-profit provider, commissioned by the HSE. “I have no objection in principle to the hoist because I could well understand when I might use it but they have adopted a religious zeal for it,” says Mr Buckley.

He says he can get out of bed “with difficulty, but it can be done”.

“I can do a lot of the manoeuvring but because they won’t let me get out of bed my muscles are gone. They say it would be risky, but I am prepared to take the risk. I appreciate they are trying to prevent injuries to staff, but it has now got to the very extreme stage that they want me to do everything by the hoist – lie down, get up, get dressed. The hoist causes me huge pain. I have damaged joints because in the first two decades of my life there really was no treatment for haemophilia.”

Mr Buckley will use the hoist “sometimes, in desperation” but he is determined that he does not always need it and “should not be forced to use it”. He has asked the HSE and Home Instead to allow him out of bed sometimes with help from the carers, “but I didn’t get very far”.

Ms O’Rourke said currently many “processes [in homecare] aren’t measured on outcomes. They are measured on time, workers and hours. What we want to see is a key focus on outcomes and those outcomes being what is important to the person receiving the service.

“What the standards are looking at is, ‘Is it in the interests of the person? Are their human rights being respected? Is the dignity there?”

Asked about cases where the provider judges that fulfilling a person’s wishes is too risky, Ms O’Rourke says: “There is positive risk-taking as well. That needs to be discussed with the person. Homecare is there is to live independently and that means different things to different people. Whatever they need to live independently, that’s what should be provided for them.”

Damien Walshe, chief executive of the Independent Living Movement, says having an independent appeals mechanism for homecare recipients is “vital”.

“Otherwise it is a system which is supposed to be empowering but is going to restrict people’s choices,” he says. “Forcing a model on to someone goes against supports that are supposed to liberate people inside and outside their homes.”

Neither Home Instead nor the HSE would comment on Mr Buckley’s case. A spokesman for Home Instead said: “Decisions in relation to the provision of care are based on the goals and needs of service users...Home Instead’s care managers are responsible for implementation of care plans as developed in consultation with clients, other healthcare professionals and the HSE. Any changes to care plans are made in the best interest of our clients’ needs and our staff’s health and safety.

“Home Instead operates best practice health, safety and welfare protocols, and our standards and processes are recognised as industry-leading.

“Home Instead has been to the fore in calling for the introduction of statutory regulation of the homecare sector and will be inputting into the ongoing consultation process being run by the Department of Health on proposed regulations.”

A HSE spokesman said: “Our caregivers are compassionate and caring individuals...Our aim is to provide the highest quality care service available, and to deliver support based on agreed care plans. Full consideration is given to a service user’s unique set of circumstances when devising their care plan. However, it is not possible to compromise on staff or a service user’s health and safety due to a specific diagnosis of the service user.”

Mr Buckley says he has throughout his life been told “you won’t be able to do this. You won’t be able to do that. You won’t be able to hold down a job or do anything.

“I couldn’t accept that. At each turn I have managed to do what they told me I couldn’t. I have maintained that attitude, and that is what is driving me through. I won’t give up on that.”