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Macmillan Beyond Diagnosis Project

Volunteer Newsletter July 2022
Macmillan Beyond Diagnosis Service



 
Hi everyone,
Welcome to the July edition of our service newsletter, we hope you find the newsletter interesting and useful. Don't forget If you have any news, information or stories that you think would be useful to share with other volunteers in this newsletter please email, text or call me and I will get back to you.

Thanks
Martine 

In this edition we have; 

1. Beyond Diagnosis Service Macmillan Review - A brief overview of the recent evaluation carried out by Macmillan on the Beyond Diagnosis Service.

2. Peer Support Sessions - A little taste of what was discussed at the last session followed by dates for the rest of the year

3. Resources for supporting clients  4. The difference a volunteer makes - We have said it before and will say it again, we couldn't do this without you. And this article gives just one example of why we keep saying it. 

5. Annual Volunteer Survey and Celebration event - Advanced notice 

6. Carers UK Survey - If you are a carer or are supporting a carer this is a national annual survey we are encouraging carers to take part in. 

7. Volunteer support at awareness raising events - Can you assist? We have one coming up in August and more to follow. 

8. Contact us - Keep in touch and/or follow us on social media, details are here. 
 

Beyond Diagnosis Service Macmillan Review

 We mentioned in the last newsletter that Macmillan who fund the Beyond Diagnosis Service, would be evaluating the service, and this happened in June. The review enables Self Help UK and Macmillan to identify any areas that could develop and improve the service to ensure continued high quality person-centred care for people affected by cancer. It also provides an opportunity to recognise the positive impact of the service provided by volunteers and staff. 

The review went really well and Macmillan were pleased with the progress we have made and to hear stories about the people we have helped. 

“We are extremely proud of this this fabulous service which makes such a huge difference to the lives of so many people living with cancer across Nottinghamshire.  The whole team, including volunteers provide emotional and practical support at a time when it is most needed, and we have heard some amazing examples of helping people to live well with cancer, not just survive.  Well done and thank you to each and every one of you”
Sue Sanderson, Macmillan Partnership Manager and Caroline Boyer, Macmillan Partnership Quality Lead

It is lovely to get great feedback from our funders, but even more special is the feedback we get from our service users, volunteers and the professionals who refer to our service. To give a very brief flavour  

“It made me feel 100 times better. I feel like a different person. You can hear it in my voice. It was amazing. Everything about it was amazing, you did a fantastic job.” A, aged 49 with Lymphoma
“I didn't think I needed the support until I had it."
"It helped me look after myself and relax instead of rushing around.” J aged 72 with breast cancer
“ I know when I refer my patients to you they’ll get top notch care – you are fab! Thank you for your enthusiasm and commitment!” – Lung Cancer Nurse

You are such an integral part of the service and we hope that you appreciate and recognise your roles in this excellent feedback from Macmillan and in particular from clients, THANK YOU for your continued and excellent support. Well done all. 
 

Volunteer Peer Support Session June 2022

In June we held a very welcome face to face peer support session and one on Zoom so that volunteers could get together and share and learn from each other's experiences. 

For these sessions we had the wonderful Kerry and Juliet giving a brief update on the increase in referrals to the service and in particular of those at the palliative stage. 13 Volunteers participated in the peer support sessions and after hearing the update from Kerry or Juliet, they talked about what this may mean for volunteer roles with BD, and shared their experiences/learning related to the areas of discussion. 

Some interesting and useful conversations were had, far too much to share in a newsletter, so I have noted a few points below. 

Referrals to Beyond Diagnosis  
The number of referrals we are receiving each month has more than doubled.
The number of referrals we receive for people who are in the palliative stage is increasing due to many contributory factors, but these might include the impact of the pandemic on the NHS and/or individuals, leading to late diagnoses, or cancer becoming more advanced.
Someone receiving palliative care or palliative treatment means that there is no cure for their cancer, but they may still live for several years.


Volunteer discussions as a response to the update 
What support might someone at the palliative stage need from volunteers for example - clients may want to discuss things like; their funeral wishes, their dying wishes, their dignity, what happens to their loved ones after they die.  For some people they won’t want to burden family or close friends by talking about these things.
Some considerations from volunteers for volunteers for example - Don’t feel you need to try to make things better, just listen, acknowledge and explore feelings. Be alongside them. 
Support, information and resources for volunteers for example - Many clients have a RESPECT plan (Recommended Summary Plan for Emergency Care and Treatment) which details their wishes, or an EPaCCS form (Electronic Palliative Care Coordinating Systems).

Thank you to all the volunteers who took part in the sessions for sharing your knowledge, experiences and questions. If anyone would like the full written overview of the peer support session discussions that took place please email  martine.sheridan@selfhelp.org.uk and I will send you a copy. 
Dates for your diaries - Peer Support Sessions 2022 

Dates and times for your diaries for the rest of the year's peer support sessions are below, apologies that the venue is not confirmed for the face to face session in October as yet, I will keep you updated once confirmed. 

If you would like to attend any of the peer support sessions please email volunteering@selfhelp.org.uk letting us know which date/s.

Peer Support sessions 2022

Mon 15th Aug           1pm-2.30pm                Zoom   
Tues 16th Aug    10.30-12 noon     In person at the Lammas Centre, Sutton  in Ashfield
Theme for these sessions - Using local knowledge to build and develop support for clients


Thursday 13th Oct      12.30-2pm            In person venue TBC 
Friday 14th Oct            4pm-5.50pm          Zoom 
Theme - to be confirmed and led by volunteers so let me know if you have suggestions. 

 

Resources for supporting clients


We know you all do a fantastic job supporting clients and your Cancer Support Coordinator is only a phone call away to support you to be the best in your role for the client. There are many opportunities and services that can contribute to clients reaching their goals or addressing issues as they arise so we thought we would share some of them with you that you may find useful either with your current match/matches or future matches. 
 

Macmillan Beyond Diagnosis Walking Groups.


We welcome and encourage anyone affected by cancer in anyway, including families, friends and carers, to come and join our Macmillan Beyond Diagnosis Walking Groups.
Walking groups – depending on ability, 5-10 minute walks & 20-30 minute walks
are available, with the support of our Macmillan volunteers and Self Help UK team.

We are also looking for volunteers to support with the Newark and Nottingham walking groups, please email martine.sheridan@selfhelp.org.uk if you would like to find out more about this volunteer opportunity. 


Location & Times
Nottingham - Forest Recreation Ground (provides generally flat wide paths, some with a slight incline and decline suitable for socially distanced walks)
Meet 11am – 12pm, every first and third Thursday.
Meeting point Forest Sports zone, Gregory Blvd, Forest Fields, NG7 6LD.

Newark Riverside Pathways (provides generally flat wide paths suitable for socially distanced walks) Meet every first and third Tuesday 11 am – 12 noon. 
Meeting point Riverside Car Park, NG24 1BS 
(next to the parlour café on the right of the road leading to the carpark entrance)

King’s Mill Reservoir – Every 2nd and 4th Tuesday of the month at 1 pm.
Meeting point – The Mill Adventure Base, King’s Mill Reservoir Access Rd,
Sutton-in-Ashfield NG17 4PA.

For those who would like to attend they can book a space by calling 0115 9111662 or emailing admin@selfhelp.org.uk.

Wellbeing Guided Walks in Nottingham 


The Canal & River Trust are inviting Nottingham residents who may feel isolated or lonely which is impacting on their wellbeing to join wellbeing guided walks and enjoy the regions beautiful waterways. Discover new walking routes, meet new people, gain the benefits of being out in nature and have a cuppa and chat on us.

The walks are taking place along the Nottingham and Beeston Canal and surrounding areas every Tuesday morning 10-12pm. We will have a new starting point every few weeks, they will be led by qualified instructors.

Session will last for approximately 2 hours including a hot drink and chat at the end of the session.

Too book onto a walk register via this link  https://www.eventbrite.co.uk/e/waterways-wellbeing-guided-walks-tickets-344696114357 or contact Carol Burrell - Community Wellbeing Coordinator  T - 0758 6969753  E - carol.burrell@canalrivertrust.org.uk 

Death Cafes 

Nottingham's Death Cafe say " We drink tea, eat cake and discuss death. Our aim is to increase awareness of death so we can make the most of our (finite) lives."
The next cafe is on  Saturday, 24th September, starting at 10am and finishing at 12 and  will take place in the Sillitoe Room, on the top floor of Waterstone's in Bridlesmith Gate (there is a lift). There will be cake on offer, and hot and cold drinks. For more information please visit https://en-gb.facebook.com/deathcafenottinghamcity/   

For general information on death cafes visit - https://deathcafe.com/ 

Look Good Feel Better

Look Good Feel Better is a National Cancer Charity  - We know how challenging it can be to process a cancer diagnosis and manage the physical and emotional side-effects of cancer treatment. This is why we run free workshops both virtually and at Cancer Care Centres and Hospitals across the UK to support women, men and young adults through this time.

Our workshops are led by trained volunteers in the beauty industry and provide practical advice about changes to skin, eyebrows, eyelashes, hair, nails and body confidence. Volunteers in the health industry also lead our well-being focused workshops covering meditation, breathwork and gentle exercise to help reduce feelings of isolation and anxiety.

The best thing about them? Every single one offers an invaluable opportunity to meet others going through a similar situation.

Some of these workshops are being run at Maggie's but they are also running a lot of online workshops – to do with appearance, but also for example chair Pilates, tai chi, mindfulness.  Which could be useful for people who don’t want to/ can’t leave their home. More information can be found here https://lookgoodfeelbetter.co.uk/ 
 

Benefits Calculator


There is a Government tool to give an idea of the sort of help people may be entitled to, with information on income-related benefits, tax credits, Council Tax Reduction, Carer’s Allowance, Universal Credit and how your benefits will be affected if you start work or change your working hours. Clients will have access to additional support related to finances but this might be a good place to get them starting to explore or start a claim - Benefit Calculator Tools - https://www.gov.uk/benefits-calculators 
 

The Difference a Volunteer Makes                                                                 

This is just one example of the difference a volunteer makes for our clients, we know there are many many more examples and we will continue to share some within our newsletter as part of our THANKS to all of you who offer your time, knowledge and experience to support clients when they need it most. You truly are integral to the service and valued by all. 


'A's Story
A is a client is in her early 50’s with an aggressive Glioblastoma.  A was matched with volunteer Sheila for 6 sessions, as the plan was for some external counselling to run briefly concurrently, but ideally take over.
Due to some issues with the external counselling by the time they were due to start, Sheila was nearly 6 sessions in, so we set up another 3 sessions to run concurrent and then drop off whilst a qualified therapist took over and looked to give advice regarding onward support thereafter directly to the client. 

A  was young and felt able to do more with her last however long she had left, yet she felt she was left to wither in a bed in her lounge.  After assessment and action from her Cancer Support Coordinator, support started to fall into place. She now goes out once a week to a garden centre and more, and even goes to the seaside for fish and chips. 

A was asked by her Cancer Support Coordinator in the interests of supporting clients in the future what she thought about volunteer support running concurrent with a qualified therapist. A said Sheila was far superior to the external counselling. Whilst they offered clinical intervention (and there’s a firm place for that), it did dovetail Sheila’s support, A felt Sheila’s support was ‘’real’’, she had lived experience that she could share and A could try and relate to. Sheila’s support was face to face, personal, and true. A said there was no contest. A’s disease has progressed and her health deteriorated, however according to her Cancer Support Coordinator she is a true inspiration. In the face of this she is ‘happier’ and fiercely fighting to enjoy her days. 

“ I love to share stories of our wonderful volunteers as they always leave me speechless. They are true wonders and the work they do is often more than words can describe, as here we have a client describing the impact of volunteer support being more impactful than a qualified therapist”. Quote from Rose - Cancer Support Coordinator 

Thank you Sheila for your continued support and time 
 

Annual Survey and Volunteer Celebration 


I will be sending out the annual survey to all volunteers within the first two weeks of August, please do make time to complete this. It is really helpful for improving and/or developing the volunteer experience for existing and new volunteers. 

There will be an additional question in the annual review form this year regarding the annual celebration event with volunteers, again this information is key for us to enable as many volunteers to take part who want to. 

Keep an eye out for the email 

 

 Carers UK Survey      

The annual State of Caring survey is the UK’s most comprehensive research into the lives and experience of carers, and supports to influence policy and campaigns alongside informing support for carers locally and nationally. 

Carers UK want to understand carers’ priorities for the future and what support they need to help recover from the pandemic, and to create a positive legacy for the future. The survey covers some really important issues for carers this year, cost of living, a new question on rural/urban, access to healthcare and hospital discharge. Checking back in on the use of tech, how accessible social care is and carers’ priorities for the future.  

If you are a carer or support a carer please complete or share this survey https://www.surveymonkey.co.uk/r/YFHDWYW
 

 Volunteer Support at Events       


Would you be interested in supporting staff at events in and around Nottinghamshire to raise awareness about the service and recruit more volunteers? We would love to have you with us, you would always be supported by a member a staff, and you can volunteer for part of the event or all of it. 

We have an event coming up on the 13th August at Forest Recreation Ground, and there will more over the course of the year. 

If you are interested please email voluntyeering@selfhelp.org.uk and a member of the team will get back to you. 
 


Thank you for taking the time to read this newsletter. If you would like to write an article or have suggestions for what could be included in the newsletter please let us know  - Email volunteering@selfhelp.org.uk 

 

Contact us 

Macmillan Beyond Diagnosis Volunteer Lead Coordinator
Email: martine.sheridan@selfhelp.org.uk
Mobile: 07415 833964

Volunteers can continue to: 
•    Visit our website www.selfhelp.org.uk 
•    Email us at  volunteering@selfhelp.org.uk 
•    Call the office  0115 9111 662 

Please follow us on

Facebook: https://www.facebook.com/SelfHelpUK/

Twitter: https://twitter.com/SelfHelpTeam

Instagram: https://www.instagram.com/selfhelpteam/
 
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