Wednesday 18 September 2019

Death by numbers: why hospice care doesn't add up in Midlands

Levels of care terminally ill patients receive can depend on their address.

Focus on homecare: John Shaw, chairman of the North Westmeath Hospice group, with volunteers, from left: Breege McArdle, Veronica Larkin, Teresa Collentine and Helen Purcell, outside their office in Mullingar, Co Westmeath. Photo: James Flynn/APX
Focus on homecare: John Shaw, chairman of the North Westmeath Hospice group, with volunteers, from left: Breege McArdle, Veronica Larkin, Teresa Collentine and Helen Purcell, outside their office in Mullingar, Co Westmeath. Photo: James Flynn/APX

Miriam Donohue

Where you live in Ireland dictates the level of care you will get at the end of life. And the bad news for the 300,000 people living in the Midlands is they are bottom of the league when it comes to the quality of hospice and palliative care services in their region.

"Whilst hospice services are under development in other parts of the country, the Midlands is being left behind, with no inpatient (level III) hospice unit, and one of the lowest levels of investment in palliative care nationally. It is a disgrace," declares Sharon Foley, CEO of the Irish Hospice Foundation (IHF).

"The level of care you have in your final weeks should not be dependent on your address or postal code. The people of the Midlands are being failed."

The IHF, a national charity whose mission is to strive for better care at end of life for all, has released figures which reveal the extent of the inequity in Ireland when it comes to looking after the dying. Only €7.66 is spent by the state per head of population on specialist palliative care in the Midland counties of Laois, Offaly, Longford and Westmeath. This compares to €30.68 in the Mid-West counties of Limerick, Clare, North Tipperary.

"These figures come from the HSE Performance Report 2015 and the CSO population figures 2011, and they tell their own sorry story," says Foley.

There is a small four-bedded level II unit in St Vincent's Hospital in Athlone, but this is mainly for respite and does not have the full range of hospice services. "Because of the lack of an inpatient (level III) hospice in the region, and the resultant specialist palliative care services that comes with it, many patients end up being cared for in an acute hospital. Some 41pc of cancer patients in Laois, Offaly, Longford and Westmeath die in an acute hospital, compared to only 21pc in the Mid-West."

The IHF has launched a campaign for action and is appealing to the five local voluntary hospice groups in the Midlands - South Westmeath Hospice, North Westmeath Hospice, Longford Hospice Homecare, Offaly Hospice Foundation and Laois Hospice Foundation - to come together to fight for a dedicated hospice unit, and to take up an invitation from the HSE to discuss coming up with capital funding for a new hospice.

A regional consultation has pinpointed a site beside Tullamore hospital in Offaly as most suitable for a hospice. The HSE says, as with other hospice developments around Ireland, they will commit to providing the revenue to run a Midlands hospice if local groups provide some funds.

But the groups say the onus should not be on them to come up with the capital costs, as this relegates vital palliative services to "charitable" status, and they want to keep their funds to pay for what it was collected for - homecare services.

This is despite the fact that they are rich in cash reserves. Accounts lodged with the Companies Registration Office show that between them, the five groups have more than €5.6m in total.

Laois Hospice Foundation had €2,057,000 in the bank at the end of last year; North Westmeath Hospice €1,474,000; Offaly Hospice €1,102,000; Longford Hospice Homecare €505,000 and South Westmeath Hospice €469,000.

Meanwhile, as the Midlands lags behind, there are a number of new hospice services being developed around the country. St Francis Hospice has opened a new unit in Blanchardstown, Dublin; Kerry has completed planning for a new hospice due to open next year; Kildare is extending and rebuilding while Waterford has also finished planning and expects to open in 2017/18.

Plans for a new hospice in Wicklow are on track and is due to open in 2018; Galway Hospice is opening six new beds next year; Marymount Hospice in Cork has finished a rebuild, while Milford Hospice in Limerick is on its second rebuild.

Senior HSE executive Pat Bennett, who took up the post of chief officer for community healthcare for the HSE Area 8 last January, admits there are no excuses to be made for the lack of resources in palliative care services in the Midlands region. But he made a strong appeal for support from the local groups for capital funding to allow the building of a dedicated hospice.

"We are not ruling out putting in a full proposal for all the capital costs but the reality is there are huge capital demands, and it would help the case if some funds were committed to."

Four of the five groups who spoke to Review say that they need their cash reserves to fund vital homecare services which were non-existent before they all started operating on a voluntary basis over 20 years ago.

John Shaw, chairman of the North Westmeath Hospice group, said his group's reserves of over €1.4m are partly due to the moratorium on recruitment by the HSE. "The money is there to pay for nurses and professionals but many posts have not been filled due to the moratorium so the money has not been drawn down.

"We need to continue to focus on homecare, but we will be happy to sit down and discuss capital funding for a new hospice with the HSE. We have to meet as an organisation to decide on that first."

He stressed that money raised has been on the basis that it is going to homecare and not a hospice unit.

Mark Connellan, chairman of Longford Hospice Homecare, said their focus is also on homecare rather than "bricks and mortar". And he said that there would be huge resistance to giving money for a hospice unit in Tullamore, which is in a different county.

"Yes we have €500,000 in the bank but all money donated is to assist with hospice homecare and to fund those services. We are not going to give that money to build a hospice in Tullamore. If we did that, we would be shot by the donors of Longford."

Chairman of Laois Hospice Foundation, Seamus O'Donoghue, said €1.3m of the €2m it has in the bank is committed to funding palliative care services over the next five years "so taking away that amount we really only have €700,000 in reserve and we need this. Income from funding has decreased in recent years and we have to have money to account for any eventuality."

However, Professor Humphrey O'Connor, chairman of the Offaly Hospice Foundation agrees with Sharon Foley that the only way the Midlands will have a hospice is if all groups work together, and while his committee has yet to meet, he would be recommending sitting down with the HSE.

He believes though that the state should be funding the building of a hospice and it should not be left to local people to come up with the money. "It is tantamount to saying palliative care is a charitable activity and it is not. We have to get real about what palliative care is. Medicine in the Midlands has been bedevilled by politics over the years."

Meanwhile, Pat Bennett admits there are geographical issues about the location of a new hospice. "But the reality is that every county can't have its own hospice. Tullamore was the site agreed after consultation and people must realise that this is a hospice for the region, not the county."

Sharon Foley says she is "quite shocked" at the extent of the reserves held by hospice groups in the Midlands. "All other charities are charged with ensuring that reserves are spent on the activities they were raised for. I think at least some of this money could be better used to develop regional services that would serve every citizen in the four Midland counties."

She acknowledges the work of the five local hospice groups in funding some of the best homecare services in the country. "While the public value this service, they are not aware of what they are missing out on. Because there is no level III hospice in the Midlands, patients are not getting the same quality of care available elsewhere.

"If they could see the services in other areas like the Mid-West, or Cork or Milford in Limerick, I believe they would be very disappointed with the services they have."

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