'Waiting lists are beyond cruel' - Families waiting for medical supplies hit by 'postcode lottery'

Ten children in Cork and Kerry are waiting up to 11 months for wheelchairs and other equipment

Rían O'Sullivan, 5, with his mum Regina Grieve who have been waiting 10 months for a device that would "be her son's voice". Photo: Eddie O'Hare

A "postcode lottery" is preventing children in Cork and Kerry from accessing much-needed medical supplies, a local TD has claimed.

Colm Burke, the Fine Gael TD for Cork North Central, was told in a response from the HSE that 10 children in the Cork-Kerry region are waiting up to 11 months for wheelchairs and other equipment.

The response says there is no waiting list in Carlow-Kilkenny, a situation Mr Burke has labelled "discriminatory and wrong". He said the HSE response shows that equipment is ordered as soon as funding is awarded, but he felt that this was not happening in Cork.

"The HSE said it regrets the fact that there can be a waiting time for important equipment such as wheelchairs. In some cases, this is due to circumstances beyond their control, such as long lead times when ordering from manufacturers.

“This, in my view, amounts to total discrimination and it shouldn’t depend on where a child lives for them to be able to access much-needed mobility aids which could drastically improve their quality of life.

"It has been indicated to me that there are as many as 18 children currently on the waiting list for medical devices in Cork and Kerry. The HSE should now clarify the current position and what action they intend to take to rectify this matter.

Colm Burke: “This, in my view, amounts to total discrimination and it shouldn’t depend on where a child lives for them to be able to access much-needed mobility aids which could drastically improve their quality of life."

“I believe the HSE must allocate funding to provide equipment to these children as a matter of urgency, as it would seem that the funding is available and must be spent by the end of the financial year.” 

Mr Burke had asked for details of 28 children awaiting medical equipment in the community health areas of Cork-Kerry and Carlow-Kilkenny.

The HSE response says it regrets the waiting times, but that these cases are often beyond the control of the executive and that a review was ongoing to allocate funds to "priority applications".

"In Carlow/Kilkenny (including Kilkenny City and North Kilkenny), there is no waiting list for equipment funding at present. Once approved at the Resource Allocation Group the order is placed.

"In CHO 4 (Cork and Kerry), children are currently on a waiting list for the provision of five wheelchairs and five other medical devices as of October 28.

"The longest time on the waiting list is currently 11 months. CHO 4 sincerely regret the fact that there can be a waiting time for important equipment such as wheelchairs. In some cases, this is due to circumstances beyond their control, such as long lead times when ordering from manufacturers. In other cases, the funding available to them does not meet the demand, and this means that not all applications can be approved immediately or as quickly as they would like.

"However, CHO 4 are currently reviewing the waitlist for aids and appliances and working to allocate funding to a number of priority applications."

The HSE told the Irish Examiner that the decision to allocate funding immediately was specific to Carlow-Kilkenny.

"This part of the answer was provided specifically by Carlow-Kilkenny. All requests for aids and appliances are dealt with on a clinical priority basis whereby the fundamental principle remains the same across the country. Each decision is made locally within the community healthcare organisation.

"All referrals for aids and appliances are considered by a multidisciplinary team and requests are assessed and categorised based on clinical priority. Funding is then allocated to purchase items that are identified as highest clinical priority taking all circumstances of each individual concerned into account."

The issue of funding for medical equipment for children has hit the headlines a number of times, most notably in the case of Adam King. 

Adam, 7, from Killeagh, Co. Cork, has osteogenesis imperfecta and made headlines after his appearance on last year's Late Late Toy Show. 

Adam's family had previously publicised his case after he was left waiting months on a wheelchair, with his parents telling the Irish Examiner in 2018 that he was spending much of his time on all fours “like an animal on the ground”.

'It would be his voice'

A Cork mother has waited 10 months for a device that would "be her son's voice".

Regina Grieve's son Rían is five years old and non-verbal. She applied in February for funding for a Liberator communications device, which costs around €5,000. 

She says the electronic board would change Rían's life. However, Regina, from Mallow, says the system for actually getting the equipment was hard to navigate and unclear.

"It would be his voice.

"Over Covid, there was no access to speech and language therapies in the HSE, so I went to a private service in Mallow. The therapist there recommended that Rían use a device as a trial and he got on really well. I wouldn't have known about this device without going private.

Regina Grieve at home with her five-year-old son, Rían. "I was going around in circles. I was getting no response." Photo: Eddie O'Hare

"I needed it to be approved by his public consultant, so there was two visits to Scoil Iosagain in Mallow where Rían is in an ASD unit to see how he was getting on before the application process began in February.

"But from there I was going around in circles. I was getting no response. The HSE told me there's a process and that applications are reviewed every two weeks, that's about as much as I was told. All of the medical appliances are grouped together, but we were never told where we were in the list. 

"Eventually we were able to find out that we were at number six in the list without being told how quickly it would move.

Regina says she was particularly annoyed when she was told that when some counties don't spend their allocated funding for equipment, it is not sent to other counties.

"Some areas didn't use their allocation, so I don't know why that couldn't be spread out to help children? I've never heard anything so stupid.

The waiting lists are beyond cruel. €5,000 isn't a lot to change a child's life. Before he had this device, Rían was screaming before this because he couldn't communicate. But now he can tell me when he's sick which is huge.

"It shouldn't take parents having to fight tooth and nail for a relatively small sum of money that could change his life.

"Everyone needs to have a voice."