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HELP THE CAUSE

SOLACE SG is a voluntary group working to improve the quality of life for people living with Sickle Cell and Thalassemia. You can help us by attending our monthly gatherings and becoming a member.
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Welcome to our October 2017 Newsletter
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Welcome to October’s edition of the Solace SG Newsletter. We hope you are well.

Solace SG has been running for almost two years and it’s now time for us to once again host elections for the board. You can find out more details below.

This newsletter contains some important updates which we hope you find useful. Our MDU and SCD clinic news also reveals how rumours that the medical day unit is being closed down, are false.

The Sickle Cell Societies brilliant peer-mentoring scheme has started, so please get in touch if you are interested or know of a young person who would benefit from using the service.

Some of you may have heard of the London Fields Lido reopening following its extensive repair and refurbishment program. But will it be accessible for disabled users, including those of us living with sickle cell and thalassemia? Our Solace Investigates section gives you an update on our campaign to improve the swimming facilities available in Hackney for our members.

As many of you will know, the access issues to our office has finally been resolved. We apologize for the inconvenience. We still require advance notice for drop in sessions but the schedule for both our coffee mornings and monthly gatherings will remain the same. You can also listen to the radio programs we have been involved with raising awareness of sickle cell and thalassemia.

Finally, please save the date of Saturday 16th December 2017 in your calendars, for our Children’s Christmas party (open to Adults). This is a day of education and healing planned for you and your family, with space for several activities and discussions on living well with sickle cell.


Wishing you all good health and a wonderful month.

Ed.

If you are able to contribute a short (400 words) empowering article or story about sickle cell for next month’s newsletter, then please email us.

Solace Social Gatherings

Thank you for attending our recent September 2017 gathering. Our next gathering is on Tuesday 17th October 2017 at 6PM (Doors open at 5:30) in the Mathews Duncan Seminar Room, Homerton Hospital, London E9 6SR.

 

This month, the new assistant psychologist, Ghiselle Green, will be attending our social gathering and providing a brief Q&A session about the service.

Also this month, we will have an open forum to discuss any issues that arise:

Open Forum

As usual we provide light refreshments, but request you to bring along a little something as well, fruit and/or water being ideal.

Looking forward to seeing you.

Parents & Carers Meet Up


Our next parents and carers meet up is on the Saturday 4th November, at our office at 1 Madinah Road. It’s strictly for the adults who are parents of/or caring for someone with SCD or Thalassaemia, and is a space to air our thoughts, tips, worries and advice with each other in a comfortable, confidential environment.
 

Listen back to Solace on the Radio




You can now listen back to our very first AntiUniversity workshop which took the form of a 2-hour radio show titled Sickle Cell: Beyond Pain (Tues 13th June 2017). We thank the people who listened and part in the event. The show focused on looking at SCD as being about more than just painful crises. We had some fantastic guests and good music.

Click here to listen (Antiuniversity broadcast)

You can also listen to Blessing and Toyin speaking about living with sickle cell to Miss Smooth on Omega radio during Sickle Cell Awareness month.

Click here to listen (Omega interview)
 

SOLACE Investigates: Heated Swimming Sessions


For several months, we have been looking into the lack of adequate swimming facilities, for people living with sickle cell that reside in Hackney. As a low-impact exercise, swimming has many health benefits for those of us living with the disorder. Not only can it help reduces stress, strengthen muscles and assist with the management of weight, it also improves cardiovascular fitness. However, in order for anyone with sickle cell to access these benefits there is a requirement that the swimming pool and environment immediately around the pool are heated to prevent a serious, debilitating crisis from occurring.

As such we have been calling for a heated session for Hackney residents with conditions like sickle cell, to be able to use the pool without risk of complication to their health and wellbeing. Several months ago we spoke with Hackney MP, Meg Hillier, who introduced us and our concerns to an official at Better - the company that now manages some of Hackney’s leisure services including the recently refurbished London Fields Lido.

 
From Better (4 May 2017):
"Whilst this is not something that we have hosted before, we would be interested in meeting with Mr Agbetu to discuss his requirements further. As a Social enterprise we are committed to working with the community, giving access to those in need of a fitter, healthier life and as such, would welcome a discussion with Mr Agbetu to see if it is possible for us to assist.

We would need to discuss options such as the number of swimmers likely to use the pool, mutually suitable days and times, pool temperature, accessible swim lanes and then the most suitable venue to host this.
 

Katie Foulger
Partnership Manager – London Borough of Hackney
GLL"


Better promotes itself as a friend to disabled users, but since then we have not had a response from them despite contacting them twice. Two months later we took the opportunity to speak directly with the current Mayor of Hackney, Philip Glanville who to his credit was familiar with some of the issues surrounding sickle cell. The Mayor offered to assist us and simultaneously put us in touch with Cllr Jon Burke who officially raised the issue in the council admin system. We are currently awaiting a response from Hackney’s Head of Leisure to address this long standing matter.
 

News

MDU / SCD Clinic News
Over the past few months, the frequent and unexpected unavailability of the Medical Day Unit (MDU) has led to many members speculating that the unit was in the process of being closed. Members from the Solace board met with Homerton CEO – Tracey Fletcher who reassured us that there were no plans whatsoever to close the Medical Day Unit. The hospital has now employed a locum doctor as a short term resolution to address the issue of staff shortage. Hopefully many of you will have started to notice the improvement in service availability.
 
Some of you were also left waiting in receptions for over an hour before being told clinics were closed. The hospital has extended its sincere apologies and is working to improve its communication with patients to ensure this does not reoccur. The recent troubles were caused by ongoing staff shortage and may factors such as unexpected illnesses. The hospital has a new senior nurse who will be providing cover whilst these issues are being resolved.
A+E Time to analgesia audit


The monthly audits recording the percentage of SCD patients in crisis/receiving pain relief within 30 mins, has shown consistent improvement from the low of 24.5% in November 2016 to 51% in March 2017. Much of the improvement has occurred due to an increase of awareness raising among staff, a process that needs to continue due to high staff turnover.
 
New Psychologist in Service

Homerton hospital has a new lead psychologist who is a specialist in Sickle Cell and Thalassaemia. Dr Dede-Kossi Osakonor whose research investigating and exploring links to the management of pain highlighted the impact of psychological processes on pain management in SCD for adults. Working alongside her is new assistant psychologist, Ghiselle Green, who will be attending our next monthly gathering.
SCS Mentoring


The peer mentoring programme for young people living with sickle cell in Hackney has commenced. The pilot which is running for a year is working with young people between the ages of 10-24 who want to benefit from the scheme. If you are based at Homerton, the Royal London or use a Hackney based GP please ask them for a referral. 
 
If you require any further information, please do not hesitate to contact mentors@sicklecellsociety.org or call 07377 170152
 
Blaire’s departure

We were very sad to learn of Blaire Barrett’s departure from the Sickle Cell Society. In the short time she has been Community Engagement Officer she has assisting several Solace SG members with many offering compliments about her enthusiasm and compassion. The Yoga and other activities she arranged have contributed to the wellbeing to our group and for that we are very grateful. We wish her every success in the future.
Solace Board Elections

Solace SG has been running for almost two years and it’s now time for us to once again host elections for the board. The main roles are chair, vice chair, treasurer and secretary, however, we are open for nominations for additional roles such as community outreach officer, parents and carers coordinator, media/communications officer and campaign officer. If you are interested in being a part of the dynamic team please send us a paragraph alongside with details of the role you are interested in. Alternatively, if you want to nominate someone for the roles listed above, then please forward us their name and a few words explaining why you are nominating them.

Events

Hackney Sickle Cell Patient Conference
When: Saturday 28th October 2017, 10:00 to 17:00
Where: The Redmond Community Centre, Kayani Ave, Woodberry Down, London N4 2HF

The Hackney Sickle Cell Patient Conference is taking place soon with much planned for the day.

Dr Tsitstikas will be talking about Research on Sickle Cell at the Homerton, Dr Telfer will cover Bone Marrow Transplant being Extended to Adults whilst Diane Abbott MP may attend to share details about the Sickle Cell All Party Parliamentary Group. There will also be presentations by Prof Simon Dyson on Sickle Cell in Schools, a talk by the highly specialist psychologist, Dr Dede-Kossi Osakonor and updates from John James of the Sickle cell Society, Solace SG and the Hackney mentors - June, Whitney and Michael
 
Sickle Cell Society - Education Workshop
When: Saturday 4 November 2017, 11:30 AM – 3:30 PM
Where: Canada Water Culture Space, Canada Water Library, 21 Surrey Quays Road , London SE16 7AR

Come and find out what you need to know about school education & sickle cell in an engaging FREE workshop.
Guest speakers will be informing and discussing vital topics such as school guide policy; personal experiences & care plans; for those with sickle cell.
Use this opportunity to understand the challenges, what you can do and what support is available.
Light refreshments will be provided
https://www.eventbrite.com/e/education-workshop-tickets-36891021037?aff=eand
Save the date! – Solace Children’s Christmas party (open to Adults)
When: Saturday 16 December 2017, 12pm-5pm
Where: Concorde Centre, Kingsmead Way, Homerton, London, E9 5PP

Raffle, children’s gift, drumming therapy, expression/acting classes, awareness/taster day, reflexology for parent/carers
 

Office Drop In Days

As winter draws closer we will have a reduced service at the office over the next few months. One of us will be there on Monday and Wednesday afternoons from 2.30. Please call before turning up to make sure we are in.

The office address is:
1 Madinah Road,
London,
E8 1PF

Membership

Once you have formally registered with SOLACE SG you will receive your membership card which will include a photo and personalised information on the back such as name, emergency contact details and allergies. Registration is free and both forms and cards for collection are only available from our monthly gatherings.

Benefits include: Advice and guidance, Member discounts, Free monthly social gatherings, Support and Information re PIP's reassessment, Access to wellbeing services to help deal with stress and long term mental well being.

We’d like to take this opportunity to say a big thank you to Eye London Opticians for offering a 10% discount to all members of SOLACE SG. Eye care is of paramount importance to people with Sickle Cell and Thalassaemia, so we are particularly pleased to have them onboard and supporting us.

Local Discounts

As well as offering peer-to-peer support both in and out of hospital, we have worked hard to secure discounts with various local businesses so for example members receive discounts at the famous All Nations restaurant opposite the Argos in Dalston, the chic Eye London Opticians on Mare Street, Reflexology sessions with  Vigour Holistics and lessons with the legendary Codners Taekwondo Academy. Beatrice Pelissier is also providing chair-based yoga with a 20% (£1) discount to any members of SOLACE SG.

The list is growing as we hope to include cinemas, theatres and activities for children.
You can become a SOLACE SG member by signing up at our monthly gatherings.

Contact Us


You can text, call or private WhatsApp us on 079455771370 or email us at info@solacesg.org.uk.

We're here to be an ear to listen, support you when you're in hospital, just getting out.We are in touch with the main clinicians at the Homerton, and can help with any complaints you might have. We also have drop in days at our office at 1B Madinah Road, E8 1PG
Copyright © 2017 Solace SG, All rights reserved.


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