Monday 21 October 2019

Family want palliative services to be delivered across the region

Brendan Keane

A family from Clonroche are calling for an immediate change to be implemented in the way palliative care is provided in the county and across the wider south east region claiming there is currently no paediatric palliative care in Wexford.

The family of 16-year-old Tyler Murphy, from Canon Murphy Park, told this newspaper 'there is no palliative care for teenagers and children under the age of 16' in the Model County at present.

Tyler passed away on Thursday, August 29, having been diagnosed with non-hodgkins lymphoma in November 2018, when he was 15.

When this newspaper visited his grandmother and guardian, Margaret Murphy, in Clonroche, she said he was deemed 'ineligible for palliative care' when he was 15 'because he was a minor' and was also 'unsuitable' for such care after he turned 16 because he didn't weigh enough to be treated as an adult.

Margaret said she doesn't want any other family to go through what they went through and that's the reason why the family want to highlight the issue of lack of care.

Following his diagnosis Tyler received chemotherapy and went into remission in February.

However, by May his family found out his cancer had spread to his liver and bowel and it was at that point they were informed that the prognosis was not good and that palliative care would be the only option open for him.

The family were told that palliative care would be set up and that night nurses would be provided when needed.

A clinical nurse coordinator was appointed to help at that point but she was linked to Crumlin Hospital, however, at the time the Murphy's 'believed' she was from the palliative team.

The family also said they were informed by the HSE at that point that a member of the national clinical programme for palliative care would also be available to step in if required.

However, by August 23, Tyler still hadn't received any palliative care at home yet the family were again informed that such care would be provided.

'We were told it was time for such care to be implemented,' said Margaret.

'This time we were told informed by staff in Wexford General Hospital,' she added.

Margaret was full of praise for the staff members in Wexford hospital who she said 'did everything they could to ensure Tyler came home'.

However, by the time Tyler passed away on August 29, he had received no official palliative care at home.

'In the south east, and certainly in Wexford, there is currently no paediatric palliative care service for people under 16 and that's not the case in the rest of the country,' said Margaret.

Tyler's aunt, Shanice, also spoke to this newspaper and said three factors led to Tyler not receiving palliative care.

'He was 15 when diagnosed and because he wasn't heavy, even when he was 16, he was deemed not suitable because he was like a child,' she said.

She also said they were told by a HSE worker that the scope of practice for healthcare professionals associated with palliative care would not have been suitable to deal with Tyler because his was a paediatric case.

'We were also told that legal reasons prevented him from receiving palliative care but we were never informed as to what those reasons were,' said Shanice.

Tyler's grand-aunt, Frances Redmond, also met with this newspaper in the family home and said the main reason why the family wanted to make public their case was to 'highlight the lack of paediatric palliative care' in Wexford and the south east and 'to ensure that no other family goes through the same thing'.

'It's too late for Tyler but hopefully by highlighting this it might stop someone else from going through it,' said Frances.

The family want changes to be implemented to ensure that adequate palliative care is in place across county Wexford and the south east for everyone regardless of their age.

In the end the family had to fight to get Tyler home before he passed away because there was no palliative care team set up for him.

'To get him home a clinical nurse coordinator had to go to Wexford General Hospital in the morning where the nurses would have the morphine dose mixed ready to be administered when she got to the house,' said Shanice.

On the day he went home Tyler's family were given a one-page A4 document outlining what they should do for him 'if anything should happen'; Tyler passed away the following day.

'At the time he came home we had little or no plan of how we were going to care for him,' said Shanice.

'We got no help from the HSE.'

When this newspaper contacted the HSE for a response to the criticism and concerns expressed by the Murphy's in relation to Tyler's case a spokesperson issued the following statement:

'It would not be appropriate for the HSE/South East Community Healthcare to comment on individual details.

We would, however, and in extending our sympathy to the bereaved on their very sad loss, be willing to arrange a meeting with the family.'

Enniscorthy Guardian