Grant to PBC Foundation (UK) Limited (GB-SC-SC022910-FR-0052854)
Funding Organization
£5,000
Recipient Organization
To contribute to the costs of extending Helpline availability and providing new digital information and support services for sufferers of incurable autoimmune liver disease Primary Biliary Cholangitis shielding from coronavirus across Scotland.
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Grant Details
| Amount Applied For | 5000 |
| Amount Awarded | 5000 |
| Award Date | 2020-04-17T00:00:00+00:00 |
| Beneficiary Location: Country Code | GB |
| Beneficiary Location: Geographic Code | S01008868 |
| Beneficiary Location: Geographic Code Type | DZ |
| Beneficiary Location: Name | Deans Village - 01 |
| Grant Programme: Title | Response Recovery and Resilience (CLOSED) |
| Last Modified | 2024-05-18T06:02:18Z |
| Recipient Org: Charity Number | SC025619 |
| Recipient Org: Company Number | SC207493 |
| Recipient Org: Description | The PBC Foundation is the only UK organisation exclusively dedicated to providing support and information to those affected by Primary Biliary Cholangitis, a progressive, incurable autoimmune liver disease with no known cause. Our aims and objectives are: ? To improve the lives of PBC sufferers by providing accurate, up-to-date information about PBC, its implications, treatments, in the form of our publications, including our information leaflets, our comprehensive compendium titled ?Living with PBC?, our quarterly Bear Facts magazine, our website and social media channels and our PBC App. ? To provide support to all affected by PBC ? including patients, their carers, concerned relatives, and friends ? in the form of our 24 hour helpline, hosting regional meetings within PBC sufferers? local community, and a volunteer network throughout every region of the UK ? To educate medical practitioners about PBC and raise awareness of the services we provide, by distributing detailed information on PBC at medical events throughout the country, and by conducting extensive outreach work ? To support research into PBC to find a cause/cure Since our establishment in 1996, we have seen our reach expand dramatically. We are a national organisation with a local outlook, now supporting over 10,000 members across the UK. All of our services are provide to registered service users free of charge, as we strongly believe that PBC sufferers should not have to pay for resources on their condition. Covid ? 19 PBC is included in the list of chronic conditions published by the government who advise those affected is to shield for 12 weeks with, we understand, a high probability that this will be extended. Those affected by PBC not only suffer physical symptoms associated with the illness but also emotional difficulties in their lifelong struggle with this incurable disease. Many already endure an overwhelming sense of isolation and we are acutely aware that social isolation has an additional profound impact on the sufferer?s quality of life. A vast majority of people with PBC are affected by mental health issues and many live in fear of what lies ahead for them. We expect this to rise with the prolonged isolation measures and increased stress and worry during the next few months as we reach the peak of Covid- 19. We are experiencing a quadruple demand on our services, for up to date information and support. To address this need we are providing a wider range of services through our helpline and social media platforms. During the Covid-19 pandemic we are seeking funding to maintain our helpline 24/7 and to expand and evolve our services to provide the best support and up to date information to those self-Isolating. Our helpline is open and we are providing support not only by phone and email, but utilising technologies such as skype, WhatsApp, Facebook, and Face time. The service is available 24 hours a day, allowing service users in different time zones to access information and support. Our helpline demand has, as is to be expected, risen meteorically through this crisis. Mobile numbers of key helpline staff have been added to our helpline answer machine message, to ensure no one feels alone during this time. What has come to the fore, from patients? comments, is that they need help to break their isolation, their feelings of hopelessness and helplessness. To this end, we have restructured and are providing a number of new digital services to our service users. Digital services include; ? Webinars (Every Monday and Thursday) Full list of topics and special guests available ? Vlogs ? Informal online coffee afternoons though Facebook (Join Robert every day at 4pm) The latest issue of our quarterly magazine was recently distributed to 8970 UK members. Many of our members do not have computers or are unable to use technology and hard copies are vital for such PBC sufferers. What we have done so far: ? Increased our emergency contact telephone numbers of key helpline staff on our 24-hour helpline 7 days a week ? Encouraged our members to contact us, whether that be for specialised information that we can obtain from our medical advisory board and chat to help ease their isolation ? Provide up to date information and guidance on our website about Covid-19 by our Medical Advisory Board who are UK PBC specialists ? Members of our Medical Advisory Board have taken time out of their busy schedules to record vlogs containing information and reassurance to our members which we post on all our social platforms. These vlogs provide reassurance and instil hope at this extremely worrying and frightening time. ? Regular vlogs by our CEO, who is also a PBC sufferer, providing updates, answering questions, offering reassurance to the PBC community that together we will prevail and come through these challenging and difficult times. It is evident from the numerous positive feedback we have received that we are making a positive difference to their varying concerns. ? Regular communications through our social media platforms ? Daily at 4pm, we host an informal Facebook Live session where participants join us for a chat and a coffee, discuss any issues and ask questions. These sessions are intended to provide interaction including some light-hearted content such as quizzes, sing alongs etc in an attempt to inject some fun and variety into the day of a PBC sufferer. The Facebook sessions are recorded and made available to anyone unable to join at 4pm. ? Support our Regional Volunteers in creating local contact groups via Whats app for patients in their area offering local support and information such obtaining prescriptions, shopping etc. ? We have identified a number of members who we believe are vulnerable and have created a ?Call back? system giving an undertaking to keep in regular contact with them. |
| Recipient Org: Web Address | https://www.pbcfoundation.org.uk |