FOLLOWING the news that Freddy Jackson’s new bed had been installed just in time for Christmas the Post visited the family on Thursday, January 23, to see how he was getting on.

Freddy’s parents Rebecca Jefferies and Andrew Jackson were over the moon when the bed arrived and were full of praise of the people of Launceston for coming together to provide this life altering piece of equipment.

Freddy, who will be three-years-old in May, has waited a long time to get the bed he needs. Freddy and his twin brother Bobby were affected by twin to twin transfusion syndrome (TTTS). This caused an uneven blood flow between the twins in the womb, with Bobby receiving more nutrients and fluid. Bobby, the recipient twin, grew too big whilst Freddy, the donor twin, grew too slowly. The boys were born in May 2017 by caesarean but sadly Bobby was born sleeping.

To help out after Freddy was born, a family kindly provided a bed, which he quickly outgrew. His parents then contacted the NHS to source a bed that could accommodate Freddy’s ever changing needs, but to no avail. The problem, they were told, was that because Freddy was born in the Snowdrop Suite of Derriford Hospital but lives across the Tamar in Cornwall, an agreement couldn’t be made as to which governing body had responsibility for providing the much needed equipment.

That’s when the mayor stepped in. Cllr Dave Gordon took it upon himself to create ‘Freddy’s Fund’ and nominated it as his mayoral charity of the year. There was a great response and just seven months later more than £4,000 was raised by the people of Launceston. As a result a suitable bed was finally purchased for Freddy and installed just in time for Christmas. Any extra funding left will be used to purchase equipment for Freddy as and when he needs it.

Rebecca said: “We just want to say thank you really for people’s generosity and to all those who supported us. Freddy has a wonderful paediatrician and physiotherapist who have also been a great support and all the local doctors, especially Dr Amit [Dhulkotia] who introduced us to Dave.

“I don’t know how many times I have cried during the journey — mostly thanks to the mayor because of his kind words and all that he has done for us. It’s just a shame the NHS couldn’t provide it.”

The new bed has made a world of difference to Freddy’s life already. Freddy has complex needs and required a bed that could adapt as he grows. Some of the requirements included high sides and being able to rise to a 45° angle.

Andrew said: “Because Freddy has acid reflux he needs to be in a certain position. Before he was in an upright position, but this new bed gives us more control. It also has the high sides we need.

“This bed will definitely last him for a few years too as it is an adult size.”

Cllr Gordon also paid the family a visit on Thursday and was pleased to hear how much the new bed, and the support of the local community, had improved things for Freddy. He told the Post: “People have been very generous. It is great to have the bed in situ.”

He said he was extremely grateful for everything the people of Launceston had given: “I had people coming up to me in the street and handing me £5 — it all helps, even the £1 donations. It is a testament to Launceston that he had his bed within seven months.”

Cllr Gordon said it had been ‘a bit of a gamble’ setting a goal of £4,000. He added: “You don’t know if people will react to it, but they did — it was definitely the right decision to make from my point of view to try and help Freddy!

“It just helps take the pressure of Rebecca and Andrew a bit as Freddy also has brothers and a sister.”

However, although this was a positive outcome for Freddy’s Fund, the family’s battle with the NHS is ongoing as they now try to establish who is responsible for covering maintenance costs.

Cllr Gordon said: “When the guarantee on the bed runs out in a year [the NHS] can’t decide who will cover the cost of maintenance.

“They haven’t had to fund it, the family are only asking them to maintain it — I don’t think that is unfair. We have saved them three and a half thousand pounds by purchasing the bed, I think they can at least come up with a practical maintenance plan. At the end of the day Freddy deserves it!”

In an attempt to push for a resolution, Cllr Gordon and the family have petitioned MP for North Cornwall Scott Mann to get involved.

Cllr Gordon said: “The family want Scott to look into getting the NHS to look into the maintenance issue. I have spoken to Scott and he said it is totally unacceptable and that it needs sorting sooner rather than later.”

Confirming this, Mr Mann said: “I raised the issue of Freddy’s bed with the Secretary of State this week, and have a further follow up meeting with the Health Minister in the next two weeks. This situation could be resolved very quickly by the Cornwall health organisations if they would meet the cost of maintenance of the bed, it should be done immediately and without the need to involve ministers.

“However, after telling the Secretary of State about Freddy’s case he is keen to get involved and resolve it. I would urge the health organisations in Cornwall to sort this out now so Freddy and his family can have the best bed available to him. The community in Launceston and the mayor have done an exceptional job raising the money and I won’t let this issue drop until it is resolved.”

The Post contacted NHS Kernow and NHS Devon Clinical Commissioning Groups for comment. Both responded, with the NHS Kernow spokesperson encouraging the family to get in touch to continue the discussion: “Funding is available from NHS Kernow to support the purchase of equipment for children like Freddy where clinicians have assessed and advised us of the need and we would encourage his parents to contact us on 01726 627800 and to continue their discussions with us.”