West Belfast dad to fight for better cancer services for young patients after daughter’s death

A West Belfast dad has hand delivered a petition for ‘age acceptable care’ for youngsters and younger adults with life threatening sicknesses to the doorways of Stormont.

When Eimear Gooderham handed away, her household promised that they’d elevate consciousness for stem cell donation and higher companies for different younger folks and their households in Eimear’s reminiscence.

The West Belfast girl was 22 when she was recognized with Hodgkins Lymphoma and died simply three years later after problems from a Donor Stem Cell transplant.

Whereas she was a affected person in 10 North at Belfast’s Metropolis Hospital, Eimear’s family members would sleep on the ground, or on chairs, as they stayed by her facet day and night time.

It is their very own expertise, which Seán described to Belfast Reside as coronary heart wrenching, which has given their household and the ‘Eimear’s Want’ group, the willpower to assist others.

Their petition, which has been supported by group sports activities groups, reached 3,630 signatures this week and was delivered to Unbiased MLA Claire Sugden.

It states: “We’re the one area of the UK, to not present age acceptable take care of youngsters and younger adults (TYA) with life threatening sickness similar to blood most cancers. We are able to discover no purpose why TYA blood most cancers sufferers must be handled within the grownup Haematology Division or why they must be handled in [an] grownup solely atmosphere.

“Our well being system is letting our kids down. Why are the mother and father of TYA, sleeping on hospital flooring beside their youngster’s mattress, why is there no correct services for households when their youngster is in hospital, for weeks and even months.

Eimear Gooderham handed away in 2019 after present process a stem cell transplant

“We all know of 5 youngsters and younger adults who’ve died since Eimear, their households will inform you a similar. Our youngsters weren’t given the respect and dignity they need to have been given. Robbed of their well being by most cancers, and of their modesty, dignity, by not having age acceptable care. There’s medical proof which proves that treating TYA in an none-age acceptable atmosphere is detrimental to their restoration when put next with these handled in an age acceptable atmosphere with age acceptable services for sufferers and their households.

“We’re asking you to signal our petition calling for age acceptable well being take care of Youngsters and Younger Adults in Northern Eire and for a single Northern Eire company to advertise Blood, Organ, and Stem Cell Donor consciousness right here.”

Chatting with Belfast Reside, Seán mentioned a current FOI response from the Division has left him pissed off and upset.

Mr Smyth requested the Division: “How do you elevate consciousness for Stem cell donation in Northern Eire, how many individuals have registered as Stem Cell Donors in Northern Eire within the final 12 months on account of your division’s marketing campaign?”

Their reply learn: “The haematology service in Belfast HSC Belief is just not instantly concerned in recruiting potential donors to those registries [which includes the British Bone Marrow Registry, Antony Nolan and DKMS], nonetheless it should signpost sufferers and members of the general public in the direction of the registries out there when enquiries are made, and infrequently present info through the Belief’s social media accounts on the way to donate.

A really emotional Sean Smyth talking to Stormont MLAs

“Because the registries should not operated by any HSC organisation, the Division doesn’t maintain any info regarding the variety of folks in Northern Eire who’ve registered their curiosity in turning into stem cell donors.

“With regard to the promotion of stem cell donation, all of those registries have very lively UK-wide communications methods and ongoing campaigns, a lot of which I perceive to be run together with households, and embrace promotion in Northern Eire.

“The Division and its arm’s size our bodies frequently promote and help public well being and security campaigns and messages by means of our social media platforms, and could be joyful to contemplate doing so within the space of stem cell donation as additional campaigns come on-line.”

The Division instructed Seán that “different vital points” which he has raised “will likely be addressed within the new most cancers technique”.

They added: “It’s envisaged {that a} public session on the draft technique will likely be printed over the summer season.”

Regardless of his disappointment, Seán says he won’t quit his marketing campaign in reminiscence of his daughter Eimear, who introduced a lot pleasure to the lives of anybody she met.

He mentioned: “The likes of organ donation has the complete help of the minister, and I’m not taking something from that marketing campaign, it is an vital one, however I simply wish to know why there is not as a lot round stem cell donation. Why will they not promote stem cell donor consciousness?

“We met the politicians and so they had been so enthusiastic to speak to me and listen to about our marketing campaign. They had been nice and promised their help.

“10 North is like strolling into 1985, truthfully. You have received a youngster, or younger grownup, and as soon as they flip 17 they go to this ward, which is for adults. It’s horrible. They’re put on this atmosphere, after being instructed they’re in poor health, with older folks.

“You get a room and if you’re fortunate you could have an en-suite. In order for you mother and father to remain, they sleep on the ground or a chair. If you wish to go for a stroll, there’s nothing there for you. There is a small fridge. The TVs do not work. The worst half about it’s you possibly can’t open a window to really feel the breeze in your pores and skin. You’ll be able to’t see a tree, or hear the birds sing.

“Why cannot issues be achieved now? I do not get it. Our marketing campaign is on the market. There are only a few individuals who do not recognise that dragonfly. Not as soon as has any of those companies shared a Tweet from us. Not as soon as. I discover that unbelievable.”

The petition will likely be debated on June 1 within the Meeting and Seán says it’s now as much as the minister to supply his help.

North Belfast MLA Carál Ní Chuilín will ask the Well being Minister the next questions, that are to be answered by June 3:

  • To ask the Minister of Well being to element the services out there for younger adults with most cancers to have a buddy, relative or guardian stick with them throughout their therapy.

  • To ask the Minister of Well being for his evaluation of age-appropriate most cancers take care of youngsters and younger adults.

  • To ask the Minister of Well being to stipulate his Division’s strategy to stem cell donation.

It has been two years since Eimear’s demise and never someday goes by the place her household do not speak about her.

“I do know it will by no means deliver Eimear again, however the considered one other household going by means of what we did is horrifying to me.

Sean Smyth talking to Stormont MLAs

“This isn’t about cash, in no way. It prices nothing to ship out a message about stem cell donation. We simply need that help and we would like age acceptable take care of our youthful people who find themselves already going by means of a lot.

“Cliftonville Women have backed us and received our brand on their shirts. It is issues like which means a lot to us. We’re so grateful to that and to the group who has backed us. However we would like the identical from our well being service.

“A toddler mendacity in mattress shouldn’t be watching her mum or dad mendacity on the ground taking shifts to remain awake. That’s not on. No approach.”

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