Fundraising Campaigns

Brick-by-Brick

Our Brick-by-Brick campaign is helping transform the Children’s Kidney Centre at University Hospital Wales, creating a brighter and more welcoming environment for children living with kidney disease and their families.

We’re incredibly grateful to the businesses that have supported the campaign and helped make this project possible. Their generosity will leave a lasting legacy, with commemorative bricks displayed within the Centre and recognition on our virtual Brick-by-Brick wall.

Gold Sponsors

• Pump Supplies
  Website: https://pumpsupplies.co.uk/
• Balmoral Tanks
  Website: https://www.balmoraltanks.com/
• Saica Pack
  Website: https://www.saica.com/en/saica-pack/
• Celtic Recycling
  Website: https://www.celtic-recycling.co.uk/
• Welsh Blood Services
  Website: https://www.welsh-blood.org.uk/
• United Worldwide Logistics
  Website: https://unitedwl.com/

Silver Sponsors

• Strength Hub
  Website: https://www.thestrengthhub.uk/

Bronze Sponsors

• UK Kidney Association
  Website: https://www.ukkidney.org/
• Will Group Wales
  Website: https://www.willgroupwales.com/
• Future Asset Manager LLP
  Website: https://www.famllp.com/

Thank you to all of our Brick-by-Brick sponsors for helping us create a brighter future for children and families affected by kidney disease across Wales.

Funding the Refurbishment of the Children’s Kidney Centre Outpatient Department

The refurbishment of the Children’s Kidney Centre, Cardiff is much needed for visitors, staff, patients, and their families, this Webinar highlights the true importance of the refurbishment to ensure that the healthcare received by people with kidney disease is a priority and should not be affected by an outdated and cluttered outpatient department. The refurbishment is crucial to the development of healthcare and treatments and to ensure that patients have an as friendly welcome from the building, as they do the staff at the CKC.

Popham Kidney Support invited a panel to represent viewpoints from consultants, clinical service lead, parents, and the charity Popham Kidney Support, to offer an all-around response and insight into the refurbishment of the Children’s Kidney Centre, Cardiff.

Nikkila Thomas, Children & Youth Support Coordinator at Popham Kidney Support hosted the Webinar and asked pre-submitted questions to the panellists, ensuring all questions that could be answered by the panel during the event were appropriately answered, and those not able to be answered by the panel, will receive a written response.

Dr Shivaram Hedge, Nephrologist Consultant gave a presentation on a Patient-Centred Perspective, demonstrating why it is so important that the Outpatient department is refurbished to ensure patients are receiving the highest quality of care in an environment that doesn’t limit this.

Alison Oliver, Clinical Service Lead for the Children’s Hospital for Wales, gave insight into the refurbishment project, highlighting what will be improved, changed and why the potential proposals and examples of how they hope the refurbishment will look when finished.

Julie Mein, parent, and Chair of the Fundraising Committee at Popham Kidney Support gave a presentation on why first impressions count, and why it is paramount that the environment of the outpatient department reflects the staff and expert care provided at the Children’s Kidney Centre, which is second to none.

Joanne Popham, CEO at Popham Kidney Support outlined the charity’s services, how they support children with kidney disease and their families at the Children’s Kidney Centre, Cardiff, and how they are supporting the refurbishment and the goal to raise £132,000.

Questions:

1. What renovations are included in the refurbishment?

Alison Oliver: The entire unit will be refurbished; flooring, lighting, electricity, and plumbing will be reviewed, including the doors. Every room in the unit will be upgraded and redecorated. New ceilings will be installed as well as ceiling lighting. Cabinetry will be installed in different areas as well as a new reception desk which will benefit not only the coordinator but everyone who works behind that desk.

2. £130,000 seems a lot of money. Do you think children on dialysis need it the most as they are the ones on dialysis for hours with nothing much to do?

Dr Shivaram Hedge: If we have a choice, everything we do would be fantastic. But with the resources available we must see what is useful for the maximum number of patients and families. The Children’s Kidney Centre and this service is used by a lot of children, a minimum of 50-60 children every week. The CKC could help a lot more children, who fortunately do not end up being on dialysis.

In future, we want to do more things for children on dialysis, but at this point in time, the Children’s Kidney Centre as you heard has not been given attention for the last ten years, so the children’s dialysis unit has recently moved upstairs to a new hospital, so the environment there is much better but certainly, this could be looked into in the future to see what children can do during dialysis so they enjoy their time better.

3. Kids are missing out on schoolwork while on dialysis – can you fund a teacher full time?

Alison Oliver: We can certainly investigate what this particular question is alluded to because obviously there is school teaching that local authorities provide for the children’s hospital and if you’re here for a certain number of hours you have to attend education whilst you are resident in the hospital, including children on dialysis. We can certainly look at fulfilling more hours if there are specific issues, but there are schoolteachers on-site, and we have to provide education whilst they are here. I know there is not a huge enthusiasm when the schoolteachers attend and go into the dialysis unit, I have to say for engagement if they don’t feel up to it, they can get out of their work fairly easily. We can certainly provide more if it is required.

Dr Shivaram Hedge: We provide a teacher for half an hour per session per child so at this point of time, so certainly, if the duration can be increased, that will be very welcome

4. A lot of children on dialysis have problems with their legs – there was talk of a bicycle pedal once to get them to exercise but there was no funding for that – could money be spent on this

Dr Shivaram Hedge: This idea has been tried in many adult centres first and then in some paediatric centres. I brought that idea to the unit a few years ago but once you get into the nitty-gritty of it, it is not just buying the bicycle, and in theory, these children are dialysing for three to for hours and they don’t do much, so it would be really good if they do something. It is good for their health and studies have shown it does help but in practice, to do it in a way that is safe, there are certain guidelines. In addition, getting bikes in place can cost thousands and must be prescribed by a physiotherapist, and they are supposed to be monitored by them. We can do it safely, but a lot of things need to be in place, one is having a bicycle which is age-appropriate so children can do this, and number two, a running contract with the physiotherapist who can attend every dialysis session and prescribe the program, monitor, and assess the children and if they are doing better, they can increase how much exercise they can do. The physiotherapists at this point are not funded for that, so unless we can get funding for the bikes and physiotherapist contracts, only then can we look into this. A word of caution, some of these children have got bad bone disease, so if we ask them to do vigorous exercise without safe monitoring, bones can be fractured, so we have to do this safely and carefully.

5. I personally think no matter what the room colours etc were like, it would never take the stress away. It seems a lot of money especially when you are in and out of a clinic?

Julie Mein: Even though the paint on the wall will not take the stress away, it can certainly change your impression when you go into the clinic, something that is bright and child-friendly will give you something to take your mind off while you are waiting to be seen. It has also been proven that certain colours can relax you, for example, blues and greens are a lot more calming than if you’ve got too many bright colours. It definitely makes a difference.

6. Do you think £132,000 could be better spent on researching kidney disease and treatments?

Alison Oliver: It is a large amount of money; however, I think it is part of treatment to have an environment that is welcoming, that is as enjoyable as it can be for the children and their parents. They do spend a lot of time attending outpatients, but it would be for the charity to decide what the priority was, and as Jo alluded earlier, when they visited some time ago, they (the Trustees at Popham Kidney Support) were disappointed by the environment although the treatment that is given is excellent, we would want the accommodation and the experience for families to match that, and that is what the project is aiming to do.

Joanne Popham: For our charity, we don’t actually invest in research, there are other charities that particularly focus on that, and they run research. We are focusing on what we do, improving the quality of life of patients and this project will definitely do that, we are pleased to be supporting it.

Dr Shivaram Hedge: Research in children with kidney disease is a very interesting area and a highly essential one because of the many kidney diseases, there is no treatment, so that area is something which is given increasing importance. The issue is, that it is a very small speciality, and the number of children who get kidney disease in the wider context is not that high to conduct research you need a lot of children. Researchers have done much research like that, nationally or internationally, or together with units, or sometimes, other countries. There are certain charities that contribute to a slightly different area, but at this point, we are also participating in different research, nationally and with other units.

7. When is the refurbishment going to start?

Alison Oliver: Amidst a pandemic, Capital Planning is currently inundated with projects, we haven’t given a time frame because once the project was costed, Covid has affected the speed of fundraising. The charity has been very successful to date, but we have no urgency this end because Capital Planning have told me this week that they are carrying an additional 75 projects to what they would be doing normally. Anticipating a start date, we  are currently looking at 2023-2024. We will continue to monitor how the charity is going along and update nearer the time once we are progressing nearer the finish line.

Joanne Popham: I do appreciate with inflation and with the length of time things might alter, so we will need to review the corridors, and I think the trustees are keen to understand what that inflation will look like, but we will wait until we come to the end.

8. How long will the refurbishment take?

Alison Oliver: Anticipating six to eight weeks but currently, everything is being delayed with Covid as we don’t know what position we are going to be in by the time we get around to the building works. All materials are delayed coming from across the world at the moment and also contractors are very unpredictable as they are under great pressure and huge demand. The workforce can not be relied upon because of people having to go off short notice with Covid contacts. We are aiming for six to eight weeks but this will be reviewed nearer the time.

9. When the refurbishment is in progress, where will treatment and appointments be relocated to?

Alison Oliver: A substantial plan for relocation will be made with Capital Planning. Shiv and his colleagues will need to deliver a like for like service in an equitable clinical area and Capital Planning will be fully aware of that and we wouldn’t start the project until we had an alternative clinical area of the same specification, and this will be located in the Children’s Hospital again.

Dr Shivaram Hedge: Ten years ago, when the refurbishment took place, I found a space where the general paediatric clinics were done so we did the clinics over there. It didn’t take too long, it was doable, and we have done it.

10. Can Noah’s Ark Help with Funding?

Written Response from Joanne Popham: Noah’s Ark are happy to support the project, meet with our fundraising team to give some advice on how to fundraise for this project. They sadly can not support with actual fundraising income due to the size of projects they, themselves are working on.

11. Could the money be spent on an apple system so they can watch a film while dialysing?

Written Response from Rhian Pearson: Another charity has purchased an apple system for us already, however, there has been difficulties with setting this system up because of IT issues. There are enough iPads available for each child on dialysis and portable DVD players to be able to watch films on. We also have a selection of games, arts and crafts, role play toys and access to gaming consoles.