TRUSTEE ANNUAL REPORT 20222023
Registered Charity No: 1171355
Twitter: @PCPLDNetwork
This Trustee Annual Report (TAR) covers the year from 1/4/2022 until 31/3/2023.
Current Trustees (as of early 2024)
The board of trustees consists of nine individuals who are mostly from healthcare (palliative care and learning disability)backgrounds
Professor Irene Tuffrey-Wijne Dr Annie Stewart (secretary) Dr Sarah Yardley The following trustees joined us in October 2022 Dr Jo Elverson Dr Valerie Potter Louise Jenkins Sarah Swindells Sue Marsden -Chair -joined us in January 2023 Mick Howe (Treasurer)joined us in October 2023
Sadly our treasurer and founder trustee Steve Mitchell died in mid 2023 after a long illness.
He will be much missed by us all.
Carol Gray resigned from the trustee board in February 2023.
Gemma Allen(Chair 2019-January 2023) also resigned from the board having led PCPLD during the pandemic and was heavily involved in producing the many excellent webinars and podcasts.
We thank her for her enormous contribution and hard work for PCPLD. Gemma remains a member.
We advertised for a new Chair and following interviews, appointed Sue Marsden as our new Chair in January 2023. Sue is a Clinical Nurse Specialist & Community Team Leader in Palliative Care , Greenwich, London.
Current Specialist Advisory Group (SAG) (as of early 2024)
This group advises the trustees and are people with a wealth of experience, including lived experience, and knowledge about palliative care and learning disabilities.
Peter Allum (representing people with learning disabilities) Pat Charlesworth (representing people with learning disabilities) Jean Willson (retired social worker, representing family carers) Louise Heatley (retired support worker, works in special educational needs)
Dr Kumar Cithambaran (Associate Professor in Intellectual disability, Dublin)) Catherine Wood (CEO of Mencap, Kirklees) James Benfield (representing people with learning disabilities) James Elsworthy(representing people with learning disabilities) Dr Claud Regnard (Honorary Consultant in Palliative Medicine at St Oswalds’ Hospice, Newcastle)
Phoebe Mooney Clinical Nurse Specialist in Learning Disability, St Christophers Hospice, London)) joined us in January 2023
Sian Mair Owen and Sharon Prowse left the group in 2022-2023 and we thank them both for their contributions and hard work for PCPLD.
PCPLD is supported by a part time website administrator, Anastasiya Stravolemova.
Membership
As of February 2024 we have 1549 members and membership remains free.
2022-2023 was a difficult year for us because of trustee illness so our planned Trustee away day in 2022 was postponed. We were also unable to hold a conference and we had fewer trustee meetings. It also highlighted the fact that our webinars and podcasts needed a huge amount of time and work devoted to them which was not possible.
Throughout the 2022-2023 year, individual trustees became involved in many projects concerning Learning Disability.
What Matters Most – this website and document for Health Care Professionals on advanced care planning and Cardio-Pulmonary Resuscitation in the community was produced by a group including Marie Curie and Royal College of GP Palliative Care lead amongst others. Gemma Allen and Sarah Yardley representing PCPLD were asked to comment on the information produced.
Medical Needs of adults with learning disability - new postgraduate qualification from Royal College of Physicians and Edgehill University. Section on palliative care written by Dr Valerie Potter.
Palliative Care Handbook - chapter on Learning Disability mentioning PCPLD written by Gemma Allen
Victoria and Stuart project - looking at co-designing a toolkit and resources for end of life care planning with people with learning disabilities within social care settings. The project is named after two of the people who inspired the research project Victoria Willson (1970-2013) and Stuart Hasler (19782020). Professor Irene Tuffrey Wijne is one of the two Principal Investigators and Gemma Allen and Sarah Swindells are two of the Co-Investigators. PCPLD is on an advisory group and is represented by Dr Annie Stewart.
A webinar in collaboration with PCPLD to officially launch the project was held on May 3[rd] 2022 - Jean Willson (a SAG member) shared the story of the life, dying and death of her daughter Victoria. There was a second collaborative webinar held on March 20[th] 2023 entitled ‘End of Life Care planning with people with Learning Disabilities” - this was presented by Amanda Cresswell and Leon Jordan (both researchers with a learning disability) together with Irene Tuffrey Wijne.
Social Media -PCPLD X (formerly known as Twitter) account is managed by Dr Valerie Potter and Phoebe Mooney (SAG member)
Financial Report
(Year ending 31[st] March 2023)
The income for the year was £768 (£7,598 in 2021/22), mostly generated from Webinar proceeds. No grants were received in the year.
Expenses totalled £5,091 (£8,428 in 2021/22) resulting in a shortfall of income over expenditure of -£4,322 (-£829 shortfall in 2021/22). The major expense in the year was the cost of a website administrator. Costs associated with the planned new website will not be incurred until 2023/24
At the end of the year we carried forward £7,588 into 2023/24.
Trustee Away Day
This was held in February 2023. Topics covered included a review of our Business Plan written by our treasurer, Steve Mitchell, future conferences- topics/keynote speakers/place, Linda McEnhill award -continuing with award for ‘Outstanding Care for an Individual’ but changing the award for ‘Innovative Practice’ to ‘Organisational Change’. Next award due in 2023 and to be announced in 2024.
Website
A major decision was taken at the away day by the trustees to commission a company to redesign and re-brand our website. A sub group was formed to oversee this and the expected launch of the website with the new logo will be in 2024.
Dr Annie Stewart, secretary of PCPLD Mrs Sue Marsden, Chair of PCPLD
Palliative Care for People with Learning Disabilities (PCPLD Network)
Charity No: 1171355
Accounts for the 12 months ending 31st March 2023
Trustees
S Marsden J Elverson L Jenkins V Potter S Swindells S Mitchell Dr A Stewart Prof I Tuffrey-Wijne Assoc Prof S Yardley
Bank
Lloyds Bank - Andover Branch
Independent Financial Examiner
Mrs A Day
CPLO Network Ch#T¥ty hlo: 1171355 B•lath¢* Sheet tr• 31st March 2023 M•r-Z3 Mar-22 Flxed Assets Current Assets Uoyds Bank Debtors £6.798.73 789.39 £10.835.2 1075.66 £7,588.12 £11.910.86 Creditors £0.00 £0.00 £7 $88.12 £11 910.86 Free ReseTve5 tr Reserve 4588.12 3000.00 £7 588.13 11910.86 £11 910.86 Refund re National Award5- refunded to PCPLD Credlt Card SlgrJed-. PCPLD Trustee Dated 10"4.L} S Mafsden PCPLD Trtjstee Dated ats1411 M5t¢hell lTrdependent Flnanclal Rovl•¥•r I have revlewed the accountlmg records presented to me foutid them to be adequate and the accovnts are in acrordance with re¢ord% SuppliÈd_The accounts are for the 12 tnonths endlng the 31st March 2023 ltydependent Exafflrner ADav 5M126104/2023PCPLD FirlItt$ 2022-2023
PCPLD Network Charity No: 1171355
SOFA
Sources & Application of Funds 2022/2023
| Income Webinar - 22/23 Donations - Others Amazon Smile Conference 21 L McEnhil Awards Expenditure Website Manager Away Day 2023 Zoom Sub Business email Webinar Exp's - Mar 23 Credit Card Fee Leaving Gifts - Gemma National Awards Eventbright - Conference Fees Webinar Expenses Conference 21 Exp's Double Click - Renew domain name Misc Lottery Community Fund -Accrual/Reverse Excess Income over Expenditure B/fwd C/fwd Unrestricted Reserves Restricted Reserve |
2022/23 £ 698.79 91% 65.00 8% 5.00 1% 0% 0% £768.79 100% 3360.00 66% 1321.47 26% 143.88 3% 110.39 2% 93.79 2% 32.00 1% 30.00 1% 0.00 0% 0.00 0% 0.00 0% 0.00 0% 0.00 0% 0.00 0% 0.00 0% £5,091.53 100% -£4,322.74 £11,910.86 £7,588.12 £4,588.12 £3,000.00 £7,588.12 |
2021/22 £ 337.83 1205.06 6.63 5928.90 120.00 £7,598.42 100% 7170.00 0.00 143.88 105.66 0.00 64.00 0.00 606.34 508.90 428.45 177.65 30.00 11.34 -818.00 £8,428.22 -£829.80 £12,740.66 £11,910.86 £11,910.86 £0.00 £11,910.86 |
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SM/22/05/2023PCPLD Finances 2022-2023.xlsx