We hope you are all doing well considering how difficult it has been over the past twelve weeks.
It’s been hard for many of you shielding and being isolated for so long.
CF Care has continued to be open during the Coronavirus to help many CF patients and their families with our grants to support those in emergency situations, with welfare and hardship grants, enabling emotional support and providing travel costs during this time. If you would like to find out more about our Covid19 Support Grants please get in touch by emailing contactus@cysticfibrosiscare.org.uk or by calling the office number 01677 470469.
We’ve also kept on fundraising with our Virtual Challenge Events during the pandemic with a Run in April and now our Cycle challenge, see more on Instagram, go to: @CF_care
It’s not too late to sign up for our Challenge Day on 28 June.
We hope to hear from you soon.
From all at Cystic Fibrosis Care
Here are some examples if hardship patients and their families are facing:
• We provided emotional support for a 13-year-old boy who was not coping with lockdown and was not eating properly, missing his friends and in poor health. We funded an approved child psychologist to provide therapy for 10 sessions. We offered a grant to cover the costs of a specialist child psychologist.
• We supported travel costs for a family with a new born with CF and serious bowel problems. As the family did not own a car, the dad had to travel by public transport to the nearest CF specialist hospital 100 miles away, leaving their first child, aged 3, also with CF with grandparents. He had to travel to the hospital every day and then return home to carry out vital physiotherapy and medications with his other child. Very sadly, the baby died at 10 days old. The family were supported with a hospital grant.
• We supported an adult CF patient whose fridge freezer broke down. He was unable to work and couldn’t afford a new one, but it was essential to his needs to keep his food and medications chilled. We helped with a grant towards a replacement fridge.
• We supported a family with a three-month old baby with CF who were struggling. The CF Team explained that mum was on low pay maternity leave and dad lost his job in February. Our emergency grant helped them through a crisis for several weeks until benefits were paid.
• We gave a substantial grant to a CF family who lost everything in a house fire in February after the CF Team and the social worker contacted us. They were out for a walk during lockdown and returned to find everything in their home destroyed and damaged and were not allowed to go back into their home as it was too dangerous. They were left with the clothes they were standing in. We supported the family with an emergency grant.
• We provided a hardship grant requested by the hospital CF Team to support a young family with three children, two suffering with Cystic Fibrosis who were in a dire situation in lockdown for a minimum of 12 weeks waiting for furlough payments by the nursing home where he worked part time on a zero hours contract, in February. He is still waiting to paid two months later, he has to wait for the furlough payment and cannot claim SSP. He has been waiting for a decision by his employers since 23 March. A grant was awarded.
• A young CF woman living at home with mum had to leave in haste as her mother had Covid-19 symptoms in February. Being in the vulnerable category she had to find another home for her twelve weeks isolation, but her only family and friends all had children, so not suitable accommodation for her. Her nearest single friend lived 150 miles away and after the CF Team and social worker contacted us. We provided a travel grant.
• A university student in her last year had to give up her part time job which helped with her living cost, as she had developed CF related Diabetes and was struggling with her deteriorating health and university costs. Her CF Team asked if we would help with her living costs. She hopes to go on to an M.A. next year. We awarded a Welfare Grant.
• We awarded a CF patient with declining health and liver problems who was spending many more weeks in hospital than expected. His CF team asked if we would support him as his mother was on low income and could not afford to travel to see him as she lived over 100 miles away from the main CF Specialist Centre. We provided travel grant.
Further support during Covid-19:
We are supporting a campaign to provide CF AB Face Masks, offering 99.99% protection which are sustainable, reusable, washable up to 100 times, with replaceable filters. Offering protection to CF patients and to those around them.
Smart Care home lung monitoring equipment. Many patients need routine assessments every six to eight weeks which is both costly and time consuming for patient and staff. A fall in lung function even quite small can indicate the presence of infection.
Suspended grants at this time:
Our campaign’s to support a new outpatients clinic at York Hospital for CF Outpatients and help towards the refurbishment of Seacroft Hospital clinic are both postponed until 2021.
The CF Care Exercise grant for gym membership and exercise bike’s are suspended until further notice.
For further information at this time please call 01677 470469 or email contactus@cysticfibrosiscare.org.uk