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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 February 2017 Newsletter
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Greetings,

Welcome to the February 2018 edition of the Solace SG newsletter. We hope you are well.

This new year brings many challenges but also many positive possibilities. We focus on some of them this month by including a profile of one of the team members involved in the successful mentoring of children and young people in Hackney.

Our first gathering of the year will be a relaxed affair reviewing the policy changes that have occurred in the Medical Day Unit. We will also be joined by some of the Homerton team to answer your questions.

New Engagement Officer
Solace formally welcomes Tracy Williams, the new City and Hackney Engagement Officer working with the Sickle Cell Society to support people living with sickle cell to access wellbeing activities such as yoga, massages, etc.

Tracy is planning a couple of "Relax, Unwind and Renew" sessions in the next few weeks designed to help people manage the challenges that come with SC and life generally. The first event is listed below, if you're interested please contact her.
 
Our Activities
We continue to liaise with groups like the CCG to share your concerns and find solutions to any outstanding issues. Two of our Board members, Oleander and June will be attending University College London Hospital (UCLH) in March as visitors to speak to medical students (future aspiring doctors) about sickle cell and how it affects children and adults. It is common practice for UCLH to have members of the community educate medical students on areas they may not be aware in relation to genetic disorders such as sickle cell.
 
The Solace elections are now going to be held in March. Whilst some of you have expressed that you are happy with the way things are, we welcome new ideas, new energy to take our group forward.
 
Thank You
Finally, we send a huge thank you to those of you who supported and attended our Christmas gathering making it a success. A special mention goes to our amazing member-volunteers as well as Tracy from the Sickle Cell Society for helping to organise the venue and excellent catering, Angie Amra Anderson for her fantastic drum therapy and reflexologist Denise who alongside Angie donated her healing therapeutic services for free.



It was great reconnecting with so many old faces, new (and rapidly growing) children and gaining new members.

As springtime draws closer we are starting to see glimpses of sunlight. Sadly, as we know this is not yet bringing any warmth with it. So please, whatever you do, keep warm, stay healthy and we hope to see you at our next gathering on Tuesday 20th February 2018, 6pm (Doors open 5:30pm) - 8:00pm at the Matthew Duncan Seminar room, Homerton Hospital E9 6SR.

The Solace SG Team

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

Solace Social Gatherings


Our next gathering takes place on:
Tuesday 20th February 2018 at 6pm - 8pm (doors open 5:30)
at the Matthew Duncan Seminar room, Homerton Hospital E9 6SR

For many of us the phrase “Care for the day, without using a bed” is the informal definition of MDU. The hospital would like to collaborate with us to create a formal definition through a brainstorming session at our next gathering.

Join us this month where some of the Homerton's MDU staff will attend to give us a six week review of the new changes. Please come and share your suggestions and any opinions you have on this or any other sickle related topic.

Looking forward to seeing you.

Events

Relax, Unwind and Renew


When
: 17 and 24 February, 11.30am - 2pm. Ending with a free lunch.
Where: Pembury Community Centre, 1 Atkins Square, Dalston Lane, E8 1FA

Exploring 3 easy steps to feeling calmer and more relaxed. Events take place over two Saturdays and include a free lunch.
To book or for more information about this and future events, contact:
tracy.williams@sicklecellsociety.org / 07809 736 099


SC Cause Fundraiser



When: Sat 14 april 2018
Where: Prospect hall, 28-42 Prospect Road, Woodford IG8 7NA


MDU / SCD Clinic News

At the start of the year Homerton University Hospital (HUH) implemented some changes to the operation of the Medical Day Unit (MDU). This was done to improve the quality of service it delivers to patients with sickle cell.  Solace SG met with the hospital to address the concerns of our members on the matter



Solace: How does HUH plan to educate sickle cell patients on the intention and subsequent planned impact of the MDU policy changes?
 
A letter has been given to each patient as they have attended MDU, Keisha has also based herself on the unit so has been available for any questions etc, which understandably there have been many. Keisha has therefore spent time with the patients explaining the reason behind the change and answering any of their questions. We will of course continue to do this as we always would if a patient had any questions.
 
Solace: Does HUH continue to see the role of MDU as “Care for the day, without using a bed”?
 
Yes absolutely as I explained when we met, the MDU is instrumental in ensuring we always have available bed capacity for those patients that require acute inpatient care.  MDU is also very important in supporting ED (A&E) to function and to provide care in a timely manner.  So yes MDU remains a very important unit within the Trust. I think we do need to move away from the term “care for the day” though.
 
Solace: What reassurances can you give that patients will still receive care tailored to their individual needs and clinical care plans?
 
I would hope that all our patients receive care tailored to their individual needs as this is certainly our aim.  For those patients that have a clinical care plan it is imperative that it is followed but also that it is reviewed regularly to ensure it is up to date and addresses their current health care needs.  So yes the protocols will still be used within MDU as part of the new changes.  If any of our patients feel that their protocol is not now being followed in light of the MDU changes then please do ask them to contact Keisha or Natasha so their concerns can be investigated.
 
Solace: The HUH does not have a ‘departure lounge” so why 4 hours? What if treatment helps manage the acute episode but the patient needs an extra hour to socially/psychologically adjust to the extended period of pain they just endured? 
 
As discussed at our meeting, we have put the 4 hours in as this mirrors the ED care delivery and therefore provides consistency across both the units from which our patients receive their emergency sickle cell care and I am sure you agree consistency is very important.  However each patient will be cared for on an individual basis and please be assured if the patient requires further time in the unit due to a clinical issue (and when I say clinical this means more than just the administration of medicine) then of course this will be facilitated.  The changes are not about discharging patients before they are clinically well enough to leave the unit. 
 
Solace: How can we measure the effectiveness of the MDU policy changes? If they don’t work what then?
 
As with any change it can take time to embed in and sometimes small tweaks along the way are needed.  I have asked Natasha to do an arrival to 1st administration of pain audit (similar to the one in ED) so we have a baseline of where we are currently as I think this is very important, because it is all well and good having capacity but if there is a significant delay in treatment then this is not good patient care. I have also asked her to look at capacity in terms of did we have to divert any patients to ED during MDU hours due to lack of capacity and also how many patients have been sent down from ED to MDU to continue their care provision.  Of course please do let me know if there is anything else you feel would be helpful, the 3 things I have highlighted are really just a starter and we need to build on these.

A&E update


The most recent figures for September showed that only 49% of people received analgesia within the 30-minute National Institute for Health and Care Excellence (NICE) guidelines. Hospital staff have reassured us that this downward trend is made worse by a small number of patients missing the target by mere minutes. Nonetheless the team is taking this seriously and are introducing changes to improve the situation. This includes working towards making sure patients are seen by a senior nurse before reception who can take them straight to the appropriate area.


Solace Board Elections 2018




The current Solace board has been serving for two years and it’s time for elections. New members often bring new ideas and new ways to find holistic solutions to challenges.

We are still looking for nominees for chair, vice chair, treasurer, secretary, parent/carer officer, media officer, membership officer, events co-ordinator and campaigner officer. Currently, many of us are doubling up on roles but to keep Solace successful as a support group we need your input.

If you are interested then please email us your name, the post you are interested in, and a short description explaining who you are and why you want to join the Solace SG team. The email address is info@solacesg.org.uk

Please write "2018 elections" as the subject mattter.
 
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.

Mentor Profile: Whitney Joseph


Whitney was diagnosed with Sickle Cell at six weeks old. Since then she has managed her condition using daily medication. She has been fortunate enough to have the support of her parents and her immediate family who have helped her to control any symptoms but she admits that she struggled with the transition into adulthood. In the past Whitney found it difficult to speak about Sickle Cell but she is now much more confident talking about her health and wants to encourage other young people to express themselves too.

Whitney graduated from the University of Essex in 2012 having studied an undergraduate law degree. She then went on to complete the post-graduate Legal Practice Course in 2014 and is now working as a trainee solicitor in London. Whitney has worked with a number of charities and organisations over the years to try and promote issues of social mobility and raise awareness of living with Sickle Cell. She has also helped to promote and encourage blood donations with a focus on donors from African and Caribbean communities.

When she’s not working or volunteering Whitney can be found trying out one of London’s fun restaurant hotspots, tuned into a Netflix series or spending time with her family and friends.

If you are, or you know, a 10-24 year old living with sickle cell in Hackney and City then email mentors@sicklecellsociety.org or call 07377 170152 to book a session or to find out more.
http://www.sicklecellsociety.org/meet-the-mentors-whitney-joseph/


 

Sickle Cell News


Innovation provides hope for sickle cell patients

‘Pioneering’ computer modelling techniques may allow scientists to provide more effective treatments for those living with the condition
http://www.voice-online.co.uk/article/innovation-provides-hope-sickle-cell-patients
Boston Resolves Civil Rights Complaint Over Students with Sickle Cell Disease
Boston has committed to ensuring that students with sickle cell disease—a genetic disorder that causes pain, fatigue, and organ damage—are identified and given appropriate accommodations, such as more time to get to class, modified physical education classes, and door-to-door transportation.

The voluntary agreement was announced Feb. 7, three years after a group of parents said their children were being unfairly penalized because the 56,000-student district didn't recognize the disease as an illness that is covered under Section 504 of the Rehabilitation Act of 1973.
http://blogs.edweek.org/edweek/speced/2018/02/boston_district_resolves_sickle_cell_complaint.html
Most children with sickle cell anemia not receiving key medication to stay healthy
13 February 2018
One of the greatest health threats to children with sickle cell anemia is getting a dangerous bacterial infection—but most are not receiving a key medication to reduce the risk, a new study suggests.
Just 18 percent of children with the inherited blood disease in the Michigan Medicine study received daily antibiotics—which are proven to reduce the risk of infection by 84 percent—according to findings that appear in the journal Pediatrics.
https://medicalxpress.com/news/2018-02-children-sickle-cell-anemia-key.html
Patients can get medical marijuana at Bethlehem dispensary (US)
13 Feb 2018

Medical marijuana products will be available for the first time to registered patients Friday at Bethlehem dispensary Keystone Canna Remedies, Gov. Tom Wolf announced Tuesday.
A dispensary in Butler County outside Pittsburgh will make medicine available one day earlier — Thursday.
http://www.mcall.com/business/healthcare/mc-biz-medical-marijuana-available-20180213-story.html
This Mum Is Using Her Voice To Battle A 'Hidden Disability'
16 Jan 2018


Mother-of-one, Marsha Howe, has lived with sickle cell all her life. In order to survive her “hidden disability” she undergoes what is known as a blood exchanges, where her sickle cell blood is “exchanged” for regular blood.
http://www.huffingtonpost.co.uk/entry/mobo-b-positive-choir-tackle-sickle-cell-blood-donor-shortage_uk_5a5e2989e4b0fcbc3a13dacb
How schools can support pupils with sickle cell disease
29th September 2017
School leaders need to understand how the condition can affect pupils at school, and make sure that their policies are offering the right support
https://www.tes.com/news/school-news/breaking-views/how-schools-can-support-pupils-sickle-cell-disease
As a carrier of the sickle cell gene trait, I have to be extra selective about who the father of my kids will be
27 Oct 2017
I can’t let fate alone decide the love of my life and who I want to make babies with. A bit of science has to play a part – and I’m not talking chemistry.
It’s biology – and no, not what you’re thinking either.

http://metro.co.uk/2017/10/27/as-a-carrier-of-the-sickle-cell-gene-trait-i-have-to-be-extra-selective-about-who-the-father-of-my-kids-will-be-7015589/
 

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, send us a private message via 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 © 2018 Solace SG, All rights reserved.


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