Here at the Paul Popham Fund, we’d like to thank Harry Weir, an inspirational 8-year boy who has virtually walked up Pen Y Fan, on his birthday, to raise funds for kidney care and celebrate being 18 months post-transplant.
He had set himself a fundraising target of £500, but, so far, has managed to raise an amazing £1230.00!
Harry was diagnosed with chronic kidney disease at 3 years old. Unfortunately, there is no cure and with only 3 types of medication to treat the disease, and one round of chemotherapy, sadly, Harry’s kidneys failed when he was 5.
Harry then started PD dialysis at home, 10 hours every night for almost 2 years. Harry suffered many side effects from kidney failure and dialysis such as high blood pressure, headaches, vomiting, itching, cramps, lack of appetite, and seizures. Harry was on the waiting list for a deceased donor for a year, while a live donor was investigated, but unfortunately, the call did not come. However, in March 2019, a match was found via the living kidney sharing scheme – Harry’s dad donated one of his for Harry to receive. We are pleased to say that both are doing very well since transplant. Harry’s quality of life has significantly improved and is now enjoying the things that all children do.
So, as you can see, Harry has climbed many mountains already in his young life.
Harry’s mum, Karen, explains:
“The plan this year was to ask Harry’s family and friends to join him in walking a mountain – Pen Y Fan. However, as Covid-19 has got in the way, we thought it would be great to still celebrate Harry’s birthday and transplant, virtually.
“Harry has been a patient at the Children’s Kidney Centre at UHW Cardiff since he was 2 years old. The team are amazing, and we are so fortunate to have the NHS. We will always be grateful and thankful for all that they do. However, the Centre is part of the old hospital building and is in need of refurbishment. The only way to test kidney function is by a blood test, and so children have no option but to go to the hospital regularly. For some, this can be traumatic, especially for families. New surroundings and updated resources would really help the experience.”
The Paul Popham Fund is leading a project to update resources and improve the surroundings, to further support families at the centre. Their refurbishment campaign has a goal to raise £132,000, with £4,000 already raised.
Please get in touch to help us raise funds at email@example.com
To read more about Harry’s amazing fundraising feat, and donate, go to: https://www.justgiving.com/fundraising/karen-weir3
The Paul Popham Fund Counselling Service provides support to patients with kidney disease and their families.
Due to COVID-19, our Counselling Service is currently being provided remotely, via the telephone or zoom. However, face-to-face support within our service area will resume when appropriate.
We are currently looking for volunteer counsellors to join our expanding team.
Counselling volunteers must be either qualified counsellors or counsellors in training.
Applicants should have passed their Fitness to Practice and be either about to start their final year of degree or diploma, or be working towards their 100 hours placement or accreditation hours.
Applicants must also have BACP membership, or membership with another counselling regulatory body.
Lived experience of kidney disease, or experience of supporting in a chronic illness setting is desirable, however full training will be provided.
Supervision is provided, as well as various CPD opportunities.
For more information or to apply, please contact Hayleigh Isaac by emailing firstname.lastname@example.org
It is very understandable – even expected –that you might be feeling anxious, depressed or even fearful about going outside and doing many of the things you took for granted before the Pandemic started.
The idea of returning to the wider world can feel even harder if you’ve got used to the safety of staying at home, especially if you had been asked to shield and have coped with it relatively well. Though it’s still important for everyone to do the things they are comfortable with, at their own pace, the benefits of getting outside and moving around, with some safe social interaction, should not be overlooked.
We all know the benefits of fresh air, sunlight and exercise, as well as seeing friends, colleagues and members of our local communities, for both general health and to make us feel happier. But the understanding of these benefits may well be overshadowed by the constant changes in the guidelines, stronger feelings of anxiety about our safety and what might happen once we venture out.
Recent reports on how to manage your worries suggest that rather than trying to fight these feelings, it can be helpful to take the opposite approach of noticing the feeling when it arises and accepting it, rather than trying to suppress or fight it.
The following 4 exercises may be helpful:
Pause to take a few deep breaths. Then name the emotion you’re feeling, accepting that it’s present in this moment, but it will pass. You’ve most likely experienced these feelings before; reflect on past times you’ve felt anxious or worried and remind yourself they won’t last.
Write a list of the things on your mind. It can be helpful to organise the thoughts that go around your head and put them on paper. You might find that those thoughts feel less overwhelming in black and white compared to thinking about them in your head.
Talk to someone you trust. Connect with family and friends via the phone or video calls. If you’re feeling anxious or overwhelmed, talk to someone you find to be supportive. Call the Paul Popham Fund Careline and talk to a trained Peer Mentor, a person with kidney disease or a carer who will understand.
- BE MINDFUL
Try mindfulness-based practices. Anxiety and worry tend to be linked to things we’re afraid may happen in the future. Being mindful can help to focus our attention on the present moment.
Don’t forget that we, the Paul Popham Fund, are here for you. If you are feeling low, anxious or just want to talk to someone who understands call our Careline at any time to talk to a trained Peer Mentor. They will listen, offer emotional support for your mental well-being as well as offering lived experience as they too are people with kidney disease or carers. Our confidential Careline is available 9:00am-6:00pm 7 days a week. You can arrange to talk to a Peer Mentor outside these ours by calling the same number or email email@example.com. If you are experiencing severe anxiety, are depressed or are generally not coping the charity also provides a counselling services which is available over the phone. To access this service, call the Careline number 0800 038 8989 or email firstname.lastname@example.org. You can register for both services free of charge. Please ensure you include the following information in your email:
- Telephone number
- Please let us know if you’re are a kidney patient, carer or family member
- An emergency contact – who do you want us to contact in an emergency?
- Password – our staff member will say your chosen password at the start of every call, this is for confidentiality and to give you peace of mind, so you know you’re speaking to a Paul Popham Fund Peer Mentor or Paul Popham Fund Counsellor.
To download the PDF click here.
The ninth edition of our Newsletter – Covid-19 Update – is now ready to view. As usual, it’s been compiled by Kidney Care UK, Kidney Wales, Paul Popham Fund, the Welsh Clinical Renal Network – which oversees services for adult kidney patients in Wales, and the Wales Kidney Research Unit – an All-Wales strategy for the study of diagnosis, prevention, treatment and social context of kidney disease.
In this issue, we share information about our collaborative virtual conferences, the results of the ‘Worried Sick Survey’ and employment support for kidney patients.
We value your opinion and would welcome your feedback on the content. What would you like to see in the future kidney patient newsletters?
Click here to download ISSUE 9
Since the 16th of August, government advice has been that those who have previously followed shielding advice no longer need to do so, unless expressly advised otherwise by a medical professional.
Some transplant patients and those on the waiting list may have been advised to continue, so please clarify with your transplant team for advice regarding your specific circumstances.
It’s also worth remembering that, while the restrictions are being relaxed, all shielding patients’ details are kept on government records and they may be asked to shield again at some point in the future, on an individual basis.
The Chief Medical Officer for Wales has written to all people on the shielding list, advising that they can now follow the same rules as the rest of the population. Which is:
- You no longer need to stay 2 metres or 3 steps away from people you live with or who are part of your extended household.
- You can now go to work, if you cannot work from home, as long as the business is COVID secure (has taken reasonable measures to minimise risk to employees);
- Children who have been shielding can return to school when schools re-start.
- You can now go out for any reason, including going to shops to buy food, but you should stay 2 metres or 3 steps from other people.
Whilst this news is a welcome relief for some, it will also be a source of concern for others. It is normal for all, regardless of whether you have been shielding or not, to feel concerned even anxious about returning to the world after lockdown.
The Welsh Government state the key things to remember are:
- Wash your hands regularly with soap and water for 20 seconds.
- Stay 2 metres or 3 steps away from people you do not live with or are not part of the one other household your family may be joined with (also known as an extended household).
- Eat healthily and take regular exercise.
- Remember to take any medication your doctor has told you to take.
- Get your free NHS jabs to protect you from other diseases such as measles (you can speak to your doctor about this).
- Get your free NHS annual flu jab when it becomes available in the autumn (you can speak to your doctor about this).
This is great advice, but what about getting out and about? How do I enter out into the world and keep myself, my child and my family safe?
The Paul Popham Fund suggest it is also worth breaking down the different factors and working out what you feel unsure about. Is it a trip to the supermarket, is it the time spent in the shop, or the drive? Could you walk instead? Could you have a socially distanced meeting with a friend to introduce a bit of familiarity? Ask: what would make this a bit more achievable?
With all this in mind, here at the Paul Popham Fund, we have come up with a 5-step personal risk assessment to help you and your family prepare for venturing back out into the world at large:
- IDENTIFY what the risks are to you. What do you consider a risk that you may face coming out of shielding? Going to the supermarket or back to school, going to a restaurant for a meal as a family, meeting friends, shopping for school clothes, doctor or hospital appointments.
- CONSIDER what could put you at risk. Carrying a shopping basket? Entering a restaurant and eating alongside others? Sitting at a desk in school that is not distributed, 2 metres apart?
- FIND OUT what measures are in place to keep you safe? Does the school, restaurant, supermarket have procedures in place to minimise risk?
- PLAN AHEAD – put a plan in place to keep you safe, your child and family safe. Know what you will do when you get to the restaurant or when your child goes back to school and try to follow it.
- REVIEW – once you have had your first experience, review what it was like and decide what you would do next time to keep you and everyone around you as safe as possible.
Try and think of all the situations you might find yourself in, so that you are well prepared for all eventualities – this should help reduce any anxiety you might feel.
Above all else, do only what you feel comfortable with in order to continue to keep you and your family safe. If you find yourself in an environment or set of circumstances that you feel may be unsafe, with increased risk, you should use your judgement and trust your instincts – don’t be afraid to tell people of your concerns.
The key message the Paul Popham Fund want to relay is that everyone should be un-shielding at your own pace and managing the process on an individual basis, and if you are really unsure seek advice.
If you have any worries concerning these issues, please contact our careline on 0800 038 8989 or email email@example.com
Click here to download the 5-step personal risk assessment as a PDF.
Back in May, a survey was launched to better understand the impact the coronavirus pandemic has been having on your lives. This meant we could focus our support on the issues that are most important to you, and ensure your concerns were raised at the highest level of the NHS and Government. More than 1,000 of you took the time to fill this in (thank you so much) and the findings can be downloaded by clicking here: Worried Sick report.
Now that the shielding programme has been paused, we would like to get your views on how you’ve felt throughout the pandemic and how this change will impact you. The results of our previous survey are already being used by kidney teams and policymakers and we hope that this one will have the same level of influence.
Click here to take part in the follow-up survey: https://www.surveymonkey.co.uk/r/Z66WJDJ
Thank you for taking the time to share your experiences.
The seventh edition of our Newsletter – Covid-19 Update – is now ready to view. As usual, it’s been compiled by Kidney Care UK, Kidney Wales, Paul Popham Fund, the Welsh Clinical Renal Network – which oversees services for adult kidney patients in Wales, and the Wales Kidney Research Unit – an All-Wales strategy for the study of diagnosis, prevention, treatment and social context of kidney disease.
In this issue, we share information about your choices when it comes to switching treatments, renal multi-disciplinary teams, and the all Wales health and wellbeing professionals group.
We value your opinion and would welcome your feedback on the content. What would you like to see in the future kidney patient newsletters?
Click here to download ISSUE 7
The sixth edition of our Newsletter – Covid-19 Update – is now ready to view. As usual, it’s been compiled by Kidney Care UK, Kidney Wales, Paul Popham Fund, the Welsh Renal Clinical Network – which oversees services for adult kidney patients in Wales, and the Wales Kidney Research Unit – an All-Wales strategy for the study of diagnosis, prevention, treatment and social context of kidney disease.
In this issue, we share information on the Distance Aware campaign, the pros and cons of the Buttonhole Technique and advice on Un-Shielding.
We value your opinion and would welcome your feedback on the content. What you would like to see in the future kidney patient newsletters?
Click here to download ISSUE 6