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Worcestershire NHS ME/CFS Local Services News

9/3/2023

 
 The Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Herefordshire & Worcestershire Health and Care NHS Trust webpage was updated in January, with information included on our ME/CFS Local Services webpage update blog.      
 
This week, we’ve received further information from Marina Townend, Specialist Occupational Therapist/ Team Lead, of the Worcestershire & Herefordshire ME/ Chronic Fatigue Syndrome and Post-Covid Syndrome services, updating us on the situation at the Worcestershire NHS ME/CFS Local Services, and responding to our queries.
 
Diagnosing ME/CFS,
Marina informs us -
Unfortunately, we are still unable to confirm a diagnosis of ME/CFS within this service, despite our continued efforts to resolve this situation.  Last year, a service level agreement was made with Birmingham and Solihull Trust whereby the Consultant in their ME/CFS service would assess 50 people within Herefordshire and Worcestershire who have a suspected diagnosis of ME/CFS. Once a diagnosis has been confirmed, we then provide a service to those patients.  This temporary arrangement has worked well but there isn't capacity to continue so we need to find another solution. 
We have been working closely with our commissioner to identify various options, and these are being discussed with GP's and at executive level within the Trust and ICB. I hope a model will be agreed soon and look forward to local people being able to receive a diagnosis (and therefore support and treatment) in a timely way.
In the meantime, GPs continue to refer to this service.  We advise about other options for diagnosis (as detailed on your website) and hold a list of the patients who are in this position.  We have also told people about the (paying) Healthcare service that Action for ME offer, but appreciate this is not an option for everyone. 
 
Action for ME’s "Healthcare Services for M.E." (mentioned by Marina above).
Following our merger with The ME Trust in February 2022, we are now able to offer Healthcare Services alongside our Information and Support, Family Support and Advocacy services.
Click on the menu for more information about each clinical service, including how to refer yourself and details of fees.
Action for ME give details of bursary support on their website.


Covid-19,
Marina informs us -
Since October 2021, the Post Covid Syndrome (PCS) service sits under the umbrella of the ME/CFS service.  Sara Young (OT) has been seconded to the Clinical Lead post, and Helen Ayres (Psychologist) and I both work additional hours to staff the PCS service.  Demand has been very high, and it has been difficult to recruit to the service due to the way that the government provides funding on an annual basis at present. 
 
The Current Worcestershire NHS ME/CFS Specialist Services, -
Marina informed us -
We have recently welcomed Ceri Howell, Therapy Assistant, to the team and she works full-time hours across both services. Mya Krishnan, Clinical Psychologist, also started with us last May, working 2 days/week. 
I am currently covering all the Occupational Therapy input in the ME/CFS service. Unfortunately, the team has been without full admin support for the past 14 months, which has been difficult but will hopefully improve soon.
We continue to offer 1:1 and group interventions, mainly (but not exclusively) on-line as the feedback we have received suggests that this is generally helpful to manage fatigue.  We are starting to get more referrals from Herefordshire GP's now, and still receive a steady stream of referrals for people with the condition who live in Worcestershire.
 
Marina also apologised for the time it has taken her to get back to us.  She explained - - it has been an even busier couple of months as I have had two 3rd year students (OT and Physiotherapy) with me and the team, and new staff members to induct.  All very positive but also time consuming...!
We are still making edits to our website, and any feedback is welcome as we are keen to improve it further, within the corporate constraints of design. I am aware there are various typos and some links that need updating, and I am still liaising with our Comms team about these so hopefully the website will be amended soon. 
I was very sad to hear about Warwick but I'm pleased that you have resumed your meet-ups, and hope to come along to one of these in the next couple of months.  It has been a challenging time for many over the past few years, and support from us all is valued and much needed.
 
The new Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] was published in October 2021.
 
See also from our website -
 
NICE ME/CFS: new Guideline (New downloadable Publications).
19/1/2022
 
NICE ME/CFS: new Guideline (Reactions).
25/11/2021
 
NICE ME/CFS: new Guideline now Published
29/10/2021
 
 
Worcester Afternoon Café Meetings
 
Our next Afternoon Café Meeting will be from 2.00 - 3.30 pm, on Wednesday 12 April, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.  (There is a lift and escalator in the store, plus plenty of parking, including blue badge spaces near the main entrance.)  
 
Our recent Worcester Afternoon Café Meetings blog, gives future dates, and further information.
 
•  Action for ME  •  Coronavirus (COVID 19)  •  Hereford 
•  Local News  •  Meetings  •  N.H.S.  •  N.I.C.E.  •  Post COVID Syndrome (Long COVID)   •  Worcestershire  •  Worcestershire M.E. Social Group  

Worcester Afternoon Café Meetings

8/1/2023

 
Our first Afternoon Café Meeting for this year will be from 2.00 - 3.30 pm, on Wednesday 8 March, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP (There is a lift and escalator in the store, plus plenty of parking, including blue badge spaces near the main entrance.)  
 
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us whenever it suits you.
 
Future dates for this year will also be on the 2nd Wednesday of each month, at the Next Café, -
          8 March;
          12 April; 
          10 May; 
          14 June; 
          12 July; 
            9 August; 
          13 September;  
          11 October; 
            8 November; 
          13 December.
 
Before Covid, we had lunches and afternoon café meetings at locations throughout the county.  Concerning future ME Social Group lunches, and further afternoon social gatherings, it has been a case of when to start again after the pandemic lockdowns.  Plus, as we don’t have a membership, and the main contact is via the website, these meetings need to be planned well ahead.  Also, previously the lunches were organised by our friend Warwick Davis, who sadly passed away in July 2021.  Warwick Davis was the Worcestershire ME Support Group’s Vice Chairman and Area Contact for Hagley, and helped with the organisation of the support group’s meetings in Kidderminster.  Many people will also have met Warwick when he organised the Social Group’s Lunches across the county for many years.
 
Future social group lunches/teas could be held at garden centres (etc) in various parts of Worcestershire - where would you like to meet, and could you help? Please discuss this at our afternoon café meetings, or let us know by completing our form.
 
Venues for previous lunches and afternoon social gatherings are listed on our meetings webpage, giving you an idea of locations where we have previously met.   Information will be on the website when these meetings are happening again, and I hope you will then be able to join us for a bite to eat, or just a cuppa and chat.
•  Local News  •  Meetings  •  Worcestershire  •  Worcestershire M.E. Social Group

Lunch Cancelled due to Coronavirus (COVID-19)

15/3/2020

 
The Worcestershire ME Social Group Lunches and Afternoon Café Meetings are being cancelled for the time being, due to the situation with Coronavirus (covid-19).

This includes the social gathering on Monday 23rd March, plus dates on the Worcestershire ME Social Group website - http://worcsmegroup.weebly.com/meetings.html

Our Coronavirus (COVID-19) blog gives guidance for people affected with ME/CFS.  It will be updated shortly with the latest situation, giving information from the M.E. national charities.

12 May - International M.E./CFS & FMS Awareness Day

22/4/2019

 
International M.E./CFS & FMS Awareness Day. 
In a recent letter, Robin Walker Worcester MP, tells us -
“I welcome ME Awareness Week, and I hope it helps more people understand this condition, which can be so frustrating and distressing for many.”
Letter from Robin Walker - March 2019
File Size: 1026 kb
File Type: pdf
Download File


May 12 - #MillionsMissing Global Virtual Meetup
#MillionsMissing is a global campaign for ME health equality.  No matter where in the world you are, throughout the day on May 12th, you will be able to call into a "virtual room" where you can connect with other activists.

Events in Worcestershire and nearby during May:
•
Wednesday 8 May,
ME/CFS NHS Service M.E. Awareness Week Drop-In
anytime between 1.00 and 3.00 pm,  at the Lyppard Hub (Ankerage Green, Worcester, WR4 0DZ)
• Thursday 9 May,
Worcestershire M.E. Social Group Afternoon Café Meeting -
from 2.30 pm to 4.00 pm, at the Olive Grove Café, David's Garden Centre by Cherry Lane, Ash Lane, Worcester, WR3 8TB
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome.  Join us for a bite to eat, or just a cuppa and chat.
• Friday 10 May  
from 12 noon - 3pm, at St Philip's Cathedral Square, Birmingham, B3 2QB
People from Worcestershire are welcome at the Solihull & South Birmingham ME Support Group’s third #MILLIONS MISSING BIRMINGHAM.  Full information from Solihull & South Birmingham ME Support Group and MEACTION.
• Tuesday 14 May
Walsall Fibro & M.E. Link Awareness Evening.  From 7.00 - 9.00 pm.
• Tuesday 21 May
Worcestershire M.E. Social Group Lunch
from 12.30 pm to 2.00 pm, at The Mayfly Restaurant, Cob House Fisheries, Worcester Road, Wichenford, Worcester, WR6 6YE
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome.  Join us for a bite to eat, or just a cuppa and chat. 
• Wednesday 29 May
Worcestershire NHS Chronic Fatigue Syndrome/M.E. Service Recovery And Management (RAM) Group.

The ME Association ask -  How will you Go Blue 4 M.E.?, and, explain  ME is REAL! Why ME Awareness Week matters more than ever…

M.E. Research UK tell us about ‘Walk for ME 2019’
The aim of Walk for ME is to get as many people as possible, especially the family and friends of those affected by ME, to do a sponsored walk, run, swim or ride of whatever length they feel comfortable with.  There is no minimum distance, no targets and, although it runs principally through ME Awareness Week (6th to 12th May 2019), no set dates. 

This year, 2019, marks the 27th anniversary of International May 12th Awareness Day.  The International Awareness Day for the spectrum of illnesses called Chronic Immunological and Neurological Diseases (CIND).

ME Awareness Day - The Birthday of Florence Nightingale
M.E. Awareness Week was established by patient advocates and is focused on May 12th, the birthday of Florence Nightingale, who was believed to have suffered with M.E.

Social Group Lunch - Wednesday 24 April - roadworks information

7/4/2019

 
Social Group Lunch - Wednesday 24 April, from 12.30 pm, St Peters Garden Centre.
Please be aware, of the roadworks near the St Peters Garden Centre.    Norton Road, from the Worcester Southern Link Road to Norton is closed.   Search for 'WR5 2NY' on the Worcestershire roadworks website to find diversion routes.

All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings.  Join us for a bite to eat, or just a cuppa and chat. 

We meet socially in many locations throughout the county.

Worcestershire CFS/ME service - Twitter Takeover

10/5/2018

 
Worcestershire CFS/ME Service took over the NHS Worcs Health Care twitter account today: -
NHS WHCT / George & Marina@WorcsHealthCare
We are Marina (Team Lead/ Specialist Occupational Therapist) and George (Honorary Assistant Psychologist) & we work in the Worcestershire CFS/ME service.

NHS WHCT / George & Marina    @WorcsHealthCare    7h
#Twittertakeover Hello! We are Marina (Team Lead/ Specialist Occupational Therapist) and George (Honorary Assistant Psychologist) and we work in the Worcestershire CFS/ME service. We’re excited about taking over Twitter for the day as part of ME Awareness week. #MEAwarenessWeek
To see the messsages from the takeover /George & Marina:
use this twitter search link (searches the @WorcsHealthCare account
from 7th to 10th May).

Marina (Team Lead/ Specialist Occupational Therapist) and George (Honorary Assistant Psychologist) dropped in on the social group at the afternoon cafe meeting today.

M.E. Awareness Month - Local Events

25/4/2018

 
Events in Worcestershire and nearby during May:      

• Wednesday 4 April - Sunday 20 May
Art and Verse Exhibition at the Artrix, Bromsgrove. Invisible: A New Look at M.E. by Anne Nicholls

From MEA facebook on 20 April:
Anne Nicholls who is exhibiting at The Artix in Bromsgrove, was interviewed on BBC Radio West Midlands recently.  The interview takes place at 1hr 20mins into the broadcast, and lets you know what the exhibition is all about as well as raising awareness of the issues relating to M.E. (Interview available until 15 May).
 
• Thursday 10 May
Worcestershire M.E. Social Group Afternoon Café Meeting -
- The Olive Grove Cafe, - David's Nurseries, Ash Lane, Worcester, WR3 8TB
David's Nurseries is closing but the Olive Grove Cafe is open. Cafe website & facebook.
Join us for a bite to eat, or just a cuppa and chat.
 
• Friday 11 May
Birmingham Millions Missing Protest.
People from Worcestershire are welcome at the Birmingham Missing Millions Protest being organised by the Walsall Fibro and ME Link and Solihull & South Birmingham ME Support Group.
 
• Monday 21 May
Worcestershire M.E. Social Group Lunch
- The Mayfly Restaurant, Cob House Fisheries, Worcester Road, Wichenford, Worcester, WR6 6YE
Join us for a bite to eat, or just a cuppa and chat.
 
• Wednesday 30 May
Worcestershire NHS Chronic Fatigue Syndrome/M.E. Service Recovery And Management (RAM) Group.

Group Lunches – Next lunch September 26.

6/9/2017

 
The next lunch will be on September Tuesday 26 from 12:30pm at De Beers Garden Centre, Kidderminster. 

Join us for lunch, or a cuppa and a chat.

Please see meetings page for dates and venues.

All people affected by M.E. (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), PVFS (Post Viral Fatigue Syndrome), and FMS (Fibromyalgia Syndrome), will be welcomed at these get togethers.

Afternoon Teas and Lunches continue

30/5/2017

 
During the summer, Worcestershire ME Social Group Afternoon Teas continue.  Also, the Social Group regularly has group lunches at locations throughout the county.

For an afternoon cuppa and chat - join us between 2.30 pm and 4.00 pm at David’s Nurseries, Worcester, on Thursday 8 June; 
Webbs of Wychbold, Droitwich on Thursday 13 July;  and
St Peters Garden Centre, Norton, Worcester on Thursday, 10 August.

Join us for lunch, or a cuppa and a chat, from 12.30 pm, at Rowberry’s Garden Centre, Lower Chaddesley Corbett on 22 June;  and Barnett Hill Garden Centre on 25 July.  Further dates and full details of venues on our website.

All people affected by M.E. (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), PVFS (Post Viral Fatigue Syndrome), and FMS (Fibromyalgia Syndrome), will be welcomed at these get togethers. 

This Social Group’s website also gives news, blogs and useful links.

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