B Healthy Chronic Kidney Disease
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A series of practical resources to enable leaders and professionals with direct reach to communities and an established, trusted relationship, for example community leaders, social prescribing link workers and faith leaders, to support their communities to reduce their risk of becoming seriously ill from Covid-19
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B Healthy Chronic Kidney Disease
- 1. 6th October 2020 Part of the BHealthy webinar series Chronic Kidney Disease Guest speakers: Professor Paul Cockwell, Consultant Nephrologist Amjid Ali, Partner, BAME Engagement and Inclusion Lead, Kidney Care UK Giulietta Whitmore, Patient Support and Advocacy Officer, Kidney Care UK
- 2. Agenda 12:30 – 12:35 Welcome, introductions and housekeeping - Stacey Gunther Public Health, Birmingham City Council 12:35 – 13:15 Speakers Professor Paul Cockwell Amjid Ali Giulietta Whitmore 13:15 – 13:30 Q&A and Discussion – Professor Paul Cockwell Amjid Ali Giulietta Whitmore
- 3. HOUSEKEEPING Please stay muted and turn your cameras off during this webinar. Please turn off any VPNs (e.g. Netmotion, Cisco, etc.) to save bandwidth. Please use the chat function to ask questions for the Q&A or you can email your questions to healthybrum@birmingham.gov.uk To make this webinar available to those that are unable to join us, today’s webinar will be recorded. The recording, with both audio and visual will be shared next week via email and online platforms.
- 4. BHealthy A series of practical resources to enable leaders and professionals with direct reach to communities and an established, trusted relationship, for example community leaders, social prescribing link workers and faith leaders, to support their communities to reduce their risk of becoming seriously ill from Covid-19 Webinar bookings via: https://www.birmingham.gov.uk/info/50238/wellbeing_during_the_coronavirus_covid- 19/2247/bhealthy
- 5. Insert Prof Paul Cockwell slides
- 6. Chronic Kidney Disease Bhealthy Webinar Amjid Ali Partner, BAME Engagement and Inclusion Lead
- 7. My Journey • Diagnosed with CRF in Oct 1987 aged 20 • Home Haemodialysis 23 years • Two failed transplant attempts - Dec 1987 and Mar 2004 • Received Living Kidney Donation - May 2011 • Health Concerns: • Cardiovascular disease • Renal Bone disease • COVID-19 • Transplantation and Organ Donation in Islam – NHS Blood and Transplant • BAME Engagement and Inclusion - Kidney Care UK
- 8. CKD Early Intervention and Prevention Do Nothing Marginalise BAME patients Disengage even the engaged Inequality of Kidney Care Maintain Status Quo Limited BAME engagement Unsatisfactory outcomes for BAME patients Duplication and Silo approach to healthcare Broaden Engagement ‘Patient Centric’ Kidney Care Empower BAME communities Improved outcomes for Patients • A key policy goal for the Government is to ensure everyone at risk of CKD receives NICE recommended annual checks and high-quality information about the condition. • Develop community interventions on CKD (promote and develop new CKD Resources, including example of good patient journey). • Proposal is to develop a Pilot focusing on the South Asian community based in the Midlands region (Birmingham). This model if successful will then be rolled out across the UK.
- 9. Gather Insight Evaluate Insight Co-design Check &Test Implement & Review Developing an Engagement and Inclusion Framework Through a process of insight, collaboration and co-design my aim is to: • Educate, Empower and Enable members of our diverse communities • Create a culture where Communities, Healthcare Professionals and Service Providers embrace their accountability towards one another • Creating the future by transforming the present
- 10. Is to better understand: • the existing CKD patient management and treatment strategies across Primary and Secondary care • the factors enabling and constraining the implementation of CKD early intervention and prevention in Primary care • the impact of information resources currently in circulation to increase patient understanding and awareness of CKD Purpose of Insight session
- 11. So that we can: • evolve to meet the needs of CKD patients from all diverse backgrounds • develop tools and resources to increase awareness and understanding of CKD • encourage active participation and decision making by CKD patients • Improve patient information materials and resources Purpose of Insight session
- 12. • How do we currently provide culturally competent CKD care? • What do we want want to provide? • What are our tangible next steps to get there? • Treating each patient as an individual • Tailored Care, Silo Out develop a ‘wrap around’ • Explore and create momentum for change Culturally Competent CKD Care
- 13. Culturally Competent CKD Care • How do you communicate? • What information sources do you use? • What works and what doesn’t? • Where do you see the gaps in the current CKD information? • What is the main barrier to patient engagement and understanding? • How do we create behaviour change? • How can we develop a strategy in Partnership?
- 15. Long Term Conditions – Chronic Kidney Disease 6th October 2020 By Giulietta Whitmore Patient Support and Advocacy Officer for the West Midlands
- 17. A Counselling support line Information Leaflets Patient Advocacy Financial Support Holiday and Short Break grants Invest more than 2 million pounds every year to improve kidney services across the UK Campaigning for Change Services Provided
- 18. What is Advocacy? • Scotland - Ewen Maclean • Scotland- Lynn Cunningham • Yorkshire and the Humber-Linda Pickering • North East England -Joanna Bates • North West England - Rob Finnigan • Northern Ireland - William Johnston • Wales – Linzi Isaac • East Midlands and East of England-Sandy Lines • West Midlands - Giulietta Whitmore • South West England - Kate Cresswell • London North-Matt Wolff • London South and Head of Advocacy - Nicholas Palmer • South East England - Caroline Young • South Central England- Claire Joyce Our Advocates are:
- 19. Pointing patients in the right direction ?
- 20. We will contact your patients via telephone. During our initial conversation we will find out their background and see what support or service they require. We will then deal with the query ourselves or signpost to the relevant service. What information do we ask for? Name: Contact telephone number: Or email address: Brief overview of support required: Refer name and contact number: Head office: 01420 541242 www.kidneycareuk.org
- 21. I can’t thank you enough for the help you have given me through this really tough time I’m going through, I’m in bits writing this email 😢. I don’t know where I would be without your support and Kidney Care UKs. Your doing an amazing job wish I could meet you in person to say thank you, you are an inspiration and again thank you so much for helping me complete my PIP form, every answer you gave me was like you were reading my mind. You're amazing thank you! Case Study
- 22. • 4/10 people reported a mental health impact • Nearly 7/10 reported disruption to care • 25% reported worries about getting food • Confusion over government advice Kidney Patient Experience-Coronavirus (Covid-19) Our worrried sick report https://www.kidneycareuk.org/news-and- campaigns/news/fears-kidney-patients-government-coronavirus-advice- leaves-thousands-dark/
- 23. • Patient info: www.kidneycareuk.org/coronavirus Coronavirus (COVID-19) & Chronic Kidney Disease
- 24. Visit: www.kidneycareuk.org Email: info@kidneycareuk.org Call: 01420 541424 Write: Kidney Care UK, 3 The Windmills, St Mary’s Close, Turk Street, Alton GU34 1EF Kidneycareuk.org @kidneycareuk @kidneycareuk Contact us giulietta.whitmore@kidneycareuk.org 01902 735430
- 26. Useful Resources Coronavirus guidance for people with kidney disease: • https://www.kidneycareuk.org/news-and-campaigns/coronavirus- Useful information and advice for kidney health: • https://www.kidneycareuk.org/get-support/ • https://www.nhs.uk/live-well/healthy-body/keeping-your-kidneys- Translated information on kidney care: • https://medlineplus.gov/languages/kidneydiseases.html § Don’t forget! World Kidney Day 11 March 2021 § https://worldkidneyday.co.uk/ (celebrate WKD in your place of awareness of kidney health)
- 27. PAGE 27
- 28. Participants Discussion – How can you support communities to have better awareness of Chronic Kidney Disease?
- 29. KEEPING IN TOUCH BHealthy handouts can be found on our website https://www.birmingham.gov.uk/info/50238/wellbeing_during_the_coronavirus_covid-19/2247/bhealthy The full list of BHealthy webinars https://www.birmingham.gov.uk/info/50238/wellbeing_during_the_coronavirus_covid-19/2247/bhealthy/2 For support with BHealthy or general enquires email healthybrum@birmingham.gov.uk or for Covid enquires email BCCCovid19@birmingham.gov.uk
Editor's Notes
- Good Afternoon, Hi I’m Giulietta Whitmore Patient Support and Advocacy Officer for the West Midlands area. Diagnosed with Focal segmental glomerulosclerosis (FSGS) in 2013, (aged 32) my kidneys suddenly failed and I spiralled into the unknown renal world, and after five and a half years of haemodialysis; four of which I did at home, I received the gift of life (a kidney transplant). My background is co-ordinating Children and Family services. I later moved into Older Persons Services, managing domiciliary care, palliative care and several mental health sites. Following my decline in health; I joined Kidney Care UK in 2017, to spend quality time with my family whilst supporting others who were faced with chronic kidney disease. I have no disclosures
- Kidney Care UK is the UK’s leading kidney patient support charity. We believe that no-one should face kidney disease alone. We provide support for more than 100 patients every week and invest over £3 million each year in patient grants. We provide practical and emotional support. We fund patient research projects and invest to improve care services. We’re here to give our total support to help improve the quality of life for everyone affected by kidney disease.
- So how do we do this? We offer: Our counselling support team offers free telephone counselling. We have many information leaflets on different aspects of kidney disease, including the conditions themselves, diagnosis, treatment, and practical information about life with kidney disease. Our trained Advocacy Officers are ready to help with local issues around treatment choice, patient transport and benefit concerns. We provide financial support for those on a low income through our grants process, these may include household items such as furniture or white goods, travel and motor expenses, unexpected bills, educational needs or hardships grants. For those unable to fund a holiday or short break Kidney Care UK give grants to individuals and families towards the cost of a basic holiday in the UK or overseas. We also support Dialysis Swap - a UK scheme to help patients find dialysis away from base. Invest more than 2 million pounds every year to improve kidney services across the UK-We work hard to make a difference to health services and patient care. Our hospital grants fund support essential psycho-social staff as well as improving facilities and care. In partnership with the British Renal Society we fund patient-centred research that will make a practical difference to care in hospitals in the short term. We work at a national and government level to improve health and care services for kidney patients. Everything we do is about ensuring that the patient voice is at the heart of national decision-making. We have a Patient Advisory Group which actively supports us in all our work.
- Every week Kidney Care UK, receive hundreds of enquiries about benefits, housing, transport, dialysis choices, work and simply managing day-to-day life. Kidney Care UK, have a network of fourteen advocates spread throughout the UK, who are all trained not only to listen and advise patients but also to fight their corner to the best effect. This means being persistent, resilient and challenging when the need arises. We often act as a bridge between the patient and renal units, local authorities, The Department for Work & Pensions along with local MPs. Advocacy is all about taking action on behalf of people.
- We help patients to gain access to the right people, services and support, and to ensure every patient is properly represented. Benefits-, we fund and provide a tailor made Welfare and Benefits Health Check service in conjunction with Auriga Services Ltd. Auriga are there to support your patient for as long as they need it, Although we will have referred your patient to Auriga, your Advocacy Officer will still be there to support them with any other concerns they may have. Kidney Care UK work alongside Auriga to ensure that your patients get all the help they need. Auriga are there to help us with our more complex cases with their wealth of knowledge on benefits and debt management. Treatment options-we provide patients an overview of all treatments available, from pre-dialysis, Heamo Dialysis, Peritoneal Dialysis, home therapy treatments to end of life care. We also offer specialised renal dietary information via our Kidney Kitchen website. Housing, we can support your patient to get assessed for suitable housing, getting them banded correctly, ensuring maintenance and repairs are carried out or joining the housing swapage scheme. We also support patients with Employment issues and Patient transport concerns. Helping them to obtain grants to support them financially; but most of all Being there to listen and support, through times of need.
- Whether you contact the help desk, use our ‘contact us’ link online or come directly to your local advocacy officer, we will request patients: Name: Contact telephone number: Or email address: Brief overview of support required: And the Refer name and contact number: We will keep the refer up to date with any progress made with the patient, until we close the case. All patient files are kept in accordance with data protection and GDPR regulations. We aim to contact your patients via telephone within 5 working days, During our initial conversation we ask them about their background and see what support or service we can offer. We will either deal with the query ourselves or signpost them to the relevant service. Each week we receive positive feedback from those we have helped: I can’t thank you enough for the help you have given me through this really tough time I’m going through, I’m in bits writing this email 😢😢I don’t know where I would be without you and kidney care uk. Your doing an amazing job wish I could meet you in person to say thank you, you are an inspiration And again thank you so much for helping me complete my PIP form every answer you gave me was like you were reading my mind. Your amazing thank you.
- After receiving a transplant a patient recently separated from partner of 20 years; and left 3 children behind. They had been left with nothing other than a bag of clothes. The patient was emotionally broken, homeless, had no money, no job, no hope and didn’t know what to do. He was allocated a one bedroom flat-via emergency housing. I supported with assisting him with benefits, we looked at how his disability effected him and I helped him complete his Personal Independence Payment form over 2 days. I also got him a grant which purchased a cooker, fridge freezer, bed, cutlery, pots and pans and plates and a little cash left over to get him some food to keep him nourished.
- in May 2020 we launched our first patient experience survey guidance for patients with kidney disease during Coronavirus (Covid-19) This identified concerning findings. There has been confusion among kidney patients regarding advice from the UK Government regarding shielding; the report found that one in ten (13%) of the patients who were not told to shield had conditions that meant they should have been shielding (such as transplants, dialysis or late stage Chronic Kidney Disease (CKD)). Worryingly, 6% of patients had received conflicting advice about whether they should shield or not and almost one in five (18%) of those told verbally to shield received no written confirmation. This left patients unable to access centrally coordinated support (including medication collection and supermarket delivery slots. This also meant that patients were unable to provide evidence to employers. Seven out of ten patients reported disruption to their care. More than a third (35%) had surgery or appointments cancelled, and a quarter (26%) had not been able to have blood tests or check-ups. With someone being diagnosed with kidney failure almost every hour in the UK (around 8,000 people a year) regular monitoring of people with kidney disease is essential. This can help delay progression of the disease and potentially the need for dialysis or transplant. Many kidney patients in the moderate to advanced stages of kidney disease will have had monitoring appointments cancelled during the pandemic. There are serious implications of failing to spot major progression of kidney disease to both the individual and NHS services.
- The latest news and information about COVID-19; for kidney patients is updated regularly on our website. In line with government advice It is critical that everybody observes the following key behaviors: HANDS – Wash your hands regularly and for 20 seconds. FACE – Wear a face covering in indoor settings; where social distancing may be difficult; and where you will come into contact with people you do not normally meet. SPACE – Stay 2 metres apart from people you do not live with where possible, or 1 metre with extra precautions in place.
- How to contact us Contact me directly or contact the main office. Thanks you! And with that - I will hand you back to Alice Spearing for the Q & A’s