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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 December 2017 Newsletter
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Greetings,

Welcome to the December edition and last Solace newsletter of 2017. We hope you are well.

This year has seen many changes in the world of sickle cell and thalassemia. Public awareness of the condition has grown as several health programs have highlighted the disorder, ground breaking medical research continues with new trials and gene based treatments being developed to help reduce and in some instance eradicate the intensity and frequency of crises. There has also been wider acceptance of the effectiveness of alternative therapies, peer mentoring, GP education sessions and the adoption of healthier holistic lifestyle changes to better manage living with the condition.  

2017 also brought many changes for the Solace support group. Not only has our membership and educational outreach programme grown, but thanks to your input and our work in partnership with various clinical staff members we’ve also seen a sustained improvement in the quality of emergency sickle cell treatment at Homerton. At our last gathering, feedback on the quality of the hospitals A&E service was overwhelmingly positive. However there has been some challenges. Funding cuts across the country has seen services that cater for sickle cell and thalassemia patients slashed or removed as managers and accountants try to manage their budgets.  

We have been told that in some extreme cases, clinics and day use facilities at various hospitals have made changes with detrimental effects on the physical and psychological wellbeing of sickle cell sufferers in order to compensate for financial maladjustments. There has also been a degradation in acknowledging the disabling nature of sickle cell and thalassemia resulting in a lack of access to state funding. This has meant that too many are struggling to live independently and with dignity without seeking goodwill handouts. As a result, the political battle to secure and recognise the need for better funding of sickle cell and thalassemia services, research and support continues.

Finally, last week saw the UK experience a barrage of snow, many of us already know that despite the appearance of the bright sun the temperature outside is freezing and has been as low as -10C. This means it is essential to wrap up warm with extra layers to help prevent triggering a crisis. We at Solace suggest irrespective of optimistic weather reports that we all prepare for the risk of snow and ice over the next few days.

Please whatever you do over this festive season, keep warm, stay healthy and have a wonderful new year.

Have a wonderful holiday break, we hope to see you at our Christmas get together on Saturday 16th December 2017, 12noon - 4:30pm at Concorde Centre, Kingsmead Way, Homerton, London, E9 5PP.

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


Thank you for attending our recent November 2017 gathering.

We are next gathering for our free Christmas get together on:
Saturday 15th December 2017 at 12noon - 4:30pm
at the Concorde Centre, Kingsmead Way, Homerton, London, E9 5PP


Join us for a free festive day of fun with games and gifts for children

Delicious Caribbean food AND a very special appearance by Santa Claus

For adults and children affected by sickle cell disease

Looking forward to seeing you.

SOLACE Investigates: Heated Swimming Sessions



Sadly, our investigation into the lack of adequate swimming facilities, for people living with sickle cell that reside in Hackney has hit another hurdle. Due to technical issues it would seem we did not receive the October response from Katie Foulger, Partnership Manager at Better. Her letter read;

 
From Better (Dated 10 October 2017, recieved 8 November 2017):

Dear M[r] Agbetu, Many thanks for your correspondence in regards to your request for heated swimming session(s) within Hackney Leisure Centres, for children suffering with sickle cell.  

In terms of the sessions you are requesting, I’m afraid we will be unable to host these within the leisure Centres. This is a result of the water temperature you require (38/39 degrees). Leisure pools operate at 28 degrees in general, and in order for us to increase the temperature to 39 degrees, we would only be able to increase the temperature by half a degree per hour, as per the guidance we have been provided, therefore to increase the water by 10 degrees, it would take approx. 20 hours to complete, in addition to the cool down time required (although this ca be achieved quicker). Additionally to the above, we would need to complete a full review of our boiler systems, as currently the boilers are not designed to heat a 25 meter pool to this temperature and hold it at this for a prolonged period of time... Ultimately your requirements are akin to a hydrotherapy pool.”

Katie Foulger
Partnership Manager – London Borough of Hackney
GLL"


In essence the company that runs leisure services in Hackney is stating that it is unwilling to make the investment required to ensure local residents living with sickle cell can take part in swimming activities without serious risk of hospitalisation. Ian Holland, the council’s head of leisure services in Hackney also wrote to us stating;

We discussed this matter at our November gathering and judging from the angry and passionate responses you want Solace SG to continue campaigning on this matter.
 

 

From Ian Holland, Head of Libraries, Leisure and Green Spaces (8 Nov 2017)

"Dear Toyin
 
Thank you for your recent correspondence to Cllr Burke, who has asked me to respond on this matter... Normally the sort of facilities you are interested in are provided in health care, special needs schools or other related settings due to the associated benefits for pain relief, recovery and treatment. You might be interested to know that there are a number of hydrotherapy pools that you may want to contact in Hackney and Islington to establish if they hire the facilities and/or allow access to members of the public (which I am aware some do):
 
Ickburgh School, Hackney: Details – http://www.ickburgh.hackney.sch.uk/ and Contact - admin@ickburgh.hackney.sch.uk
 
Richard Cloudesley School, Islington: Details - http://www.cloudesley.islington.sch.uk/hydrotherapy/ and Contact - admin@cloudesley.islington.sch.uk
 
The Bridge School, Islington: Details -  https://www.thebridgelondon.co.uk/about-the-trust/facilities-hire/hydrotherapy-pool.html and Contact - facilities@thebridge.islington.sch.uk   
 
The Garden School, Hackney: Details - http://www.the-garden.org.uk/our-school/our-building/ and Contact - admin@thegarden.hackney.sch.uk
 
I also understand that  Kids Adventure Play on Spring Lane, Hackney E5 9HQ also has a hydrotherapy pool but it may not be operational at present.
 
I hope the information provided is useful and helps you find suitable provision.
 
In terms of the Lido, this is a refurbishment of the existing pool and changing rooms – there is no new provision being introduced to the site.”

MDU / SCD Clinic News

In our last newsletter we explained that 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. This month she also responded in writing addressing some of the core concerns many of you have raised with us.
 


Solace: Is the Medical Day Unit being shut down?


I am sorry that the members of your support group have been worried that there is a plan to close the Medical Day Unit. As discussed at the meeting, this is certainly not the case. As I am sure you are aware, the hospital is one of a very small number of specialist sickle cell services that operate a Walk in day unit and at this stage we have no plans to close it as we are of the opinion this compliments the service and is of benefit to our patients.

Solace: Why has MDU been closed so often?

There have been staffing issues on the unit recently which have resulted in early closures on several occasions. Whilst I fully appreciate this is far from ideal, the safety of our patients is paramount and has to be our priority. When staffing is below the level required we must take action to address this. As you know the mitigation for this is for the patients to attend the Emergency Department for their treatment.
 
Solace: What are you doing about staff shortages?

In regards to the junior doctor medical cover, we have sourced a locum and the service does not foresee any issues in junior medical provision on the unit moving forward. Unfortunately nursing at this stage is not so positive in that we continue to have a vacancy at senior sister/charge nurse level. This is currently out to advert and we are aiming to interview in the next couple of weeks. In the interim, we have cover for 3 days per week with senior oversight. We have successfully recruited to the senior staff nurse post and the postholder started with us two weeks ago. However, we continue to have a staff nurse vacancy and we are attempting to recruit to this. We will continue to source temporary staff to cover these shifts.
 
Solace: Are other patients being penalised by a failure to clinically address the needs of persistent, regular MDU users?

I cannot disclose patient identifiable information to answer your question about failing clinical treatment plans for some of the more regular day attenders. Please be assured that we offer the service to all our patients and there is no difference between any patient or groups of patients in regards to accessing the unit.
 
Solace: How long does it take from extracting a blood sample to get a Haemoglobin count to assess
the level of sickling in a patient?

The Haemoglobin count will provide the sickle percentage in around one hour in an emergency situation. However this percentage does not reflect the level of sickling' - there is no laboratory test that can provide this level of detail.
 
Solace: Why do our members receive half the dosage of morphine/diamorphine that they receive if attending the Royal London in similar circumstances? Is this a cost saving exercise?
 
In regards to the medication administration and the difference between the Homerton and Royal London Hospital (RLH), please be assured this has nothing to do with financial savings. The RLH administer only Morphine to their sickle cell patients and the dosages are different to Diamorphine which is the drug we currently use for pain relief. It is not possible to do a like for like comparison with these 2 drugs in regards to dosages.
 
Solace: What clinical justification is there for moving all sickle cell patients off diamorphine onto
morphine without consideration of their individual needs?

As you and your members have already highlighted, the RLH already only use Morphine and the Homerton are one of the last specialist centres to continue administering Diamorphine. I can confirm, it is the plan to transfer the majority of our patients onto Morphine. However this will be after consultation with the patient; of course we will always aim to seek their agreement but if this is felt to be the correct clinical pathway then the change will be instigated.
 
Solace: Why are pre-booked clinics being cancelled with no warning or communication? Does the hospital acknowledge the extra stress this causes patients, some who have taken time off work to attend?

The issue of the clinic cancellations and the patients not being informed is entirely a failure in communication from the service and I am sincerely sorry for this. The reason for the cancellation was due to staff absence; however this absence was known about before the day and therefore all the patients should have been communicated with and informed not to attend clinic and information provided to them as to their ongoing care needs in regards to their medication. I am also very disappointed that the patients were not told immediately on entering the unit that the clinic was cancelled; this has been discussed at length with the team, both nursing and administration. I am pleased to note that this clinic is now running smoothly (following a service review of clinic capacity) and there have been no further cancellations. This however does not detract from the previous unacceptable failure of communication which is regrettable.

I can only imagine the frustration caused when arriving for an appointment and being informed it is cancelled. Please be assured that the provision of a high quality sickle cell service remains a priority of the Trust and I would welcome the opportunity to attend one of the support group meetings if you feel this would be beneficial.

Yours Sincerely
Tracey Fletcher, Chief Executive, Homerton University Hospital
 
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.

Sickle Cell News

Sickle-cell disease gets rush of gene-based research
Dec 12, 2017

More than 50 years after the cause of sickle-cell disease was discovered, a dozen treatments for the painful and life-shortening inherited condition offer hope for long-overlooked patients.
http://www.chicagotribune.com/lifestyles/health/ct-sickle-cell-gene-based-research-20171212-story.html
CTX001 to Be Developed as Gene-Editing Therapy for Sickle Cell Disease
December 14, 2017

Vertex Pharmaceuticals and CRISPR Therapeutics recently announced a joint collaboration to co-develop and co-commercialize CTX001 as a gene-editing treatment of diseases of hemoglobin, including β-thalassemia and sickle cell disease (SCD).
https://sicklecellanemianews.com/2017/12/14/sickle-cell-disease-beta-thalassemia-gene-editing-investigational-therapy-ctx001-crisprcas9-vertex-crispr-therapeutics-moves-forward/
Putney mum with sickle cell disease (SCD) calls for more BAME donors
28 Nov 2017

A Putney mum who almost died as a baby has made it her mission to help others with the same disease as her. Chanel Taylor, 33, underwent a blood transfusion at nine months old when doctors said it was a miracle she survived.

http://www.wandsworthguardian.co.uk/News/15688915.Mum_who_cheated_death_as_a_baby_is_now__warrior__in_fight_against_rare_disease/
'Negative emotions' linked to higher rates of opioid use in sickle cell disease
Nov 27, 2017
A link has been found between negative emotions, such as sadness and anxiety, and higher opioid use in people with sickle cell disease whose pain levels were self-reported as relatively low. These conclusions come from a small study using data from daily electronic patient diaries.
https://www.sciencedaily.com/releases/2017/11/171127124714.htm
Link to Journal: http://www.jpain.org/article/S1526-5900(17)30701-0/pdf
Teen with Sickle Cell Disease Takes Class Trip to Europe with Loyola Medicine’s Help
30 Nov 2017

Anyah Randolph, a teenager with sickle cell disease (SCD), was recently able to join her school class on a trip to Europe – and even climb the Eiffel Tower in Paris after the elevator broke – thanks to the help of hydroxyurea and Loyola Medicine pediatricians.
https://sicklecellanemianews.com/2017/11/30/teen-with-sickle-cell-disease-goes-to-europe-with-loyola-medicines-help/
10 Things You Should Know About Sickle Cell
23 Nov 2017

The B Positive choir made their debut with an exclusive performance yesterday at the MOBO Pre Awards Show at Boisdale Canary Wharf, London.

Read more: http://www.femalefirst.co.uk/health/sickle-cell-1109042.html#ixzz51KsZ6RsB
Expert Analysis Updates Advice on Managing Sickle Cell Retinopathy
Nov 28, 2017

Following a review of studies published in the last decade, experts have updated their recommendations for managing a sickle cell disease-related eye complication known as sickle cell retinopathy (SCR).
https://sicklecellanemianews.com/2017/11/28/sickle-cell-retinopathy-improving-care-with-a-multidisciplinary-approach/
Journal: https://www.dovepress.com/sickle-cell-retinopathy-improving-care-with-a-multidisciplinary-approa-peer-reviewed-article-JMDH
Increase in a Type of Gut Bacteria Linked to More Pain in Patients with Sickle Cell Disease


Howard University researchers have discovered a link between increases in Veillonella gut bacteria and higher levels of pain in sickle cell disease patients. Sickle cell disease is a blood disorder whose symptoms include frequent bouts of pain. Scientists know that gut bacteria play a key role in sickle cell patients’ health, but they haven’t looked at which bacteria might be playing important roles.

Howard researchers decided to characterize the gut microbiome — or bacterial mix — of sickle cell patients by analyzing the bacterial composition of patients’ stool. They discovered a significant imbalance in patients’ gut microbiome, compared with healthy people. Several species of bacteria were depleted, and there were higher levels of Bifidovacteria, Campylobacter, Veillonella, Actinomyces, Scardovia and Atopobium.
https://sicklecellanemianews.com/2017/11/16/study-links-pain-in-sickle-cell-disease-to-increase-in-a-type-of-gut-bacteria/
'It’s like millions of ants are biting my bones' – fighting sickle cell disease in Nigeria
More people are affected by sickle cell in Nigeria than in any other country, so why is there a stigma around it – with even restrictions on who sicklers can marry?
https://www.theguardian.com/global-development-professionals-network/2017/jul/19/its-like-millions-of-ants-are-biting-my-bones-fighting-sickle-cell-disease-in-nigeria
 

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 © 2017 Solace SG, All rights reserved.


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