MDS UK

Events

Patient Meeting Events

MDS UK offers two types of patient meeting events:

  • National Patient and Family Forum Events
  • Local Patient and Family Groups

National Patient and Family Forum Events

Our patient and family forum events are open to all MDS patients and their guests and are free of charge.
It is a whole day event – starting about 10am – finishing around 4pm.
Patients and their families have the opportunity to participate in informal discussions regarding their quality-of-life issues living with MDS. New therapies and patient treatment options are discussed, presented by our guest speakers – MDS specialist physicians and nurses. Attendees are also given the opportunity to participate in a question and answer segment with the guest speakers.

We actively encourage all patients and family members to attend these information and support events.

Several forum events in various cities are planned for this year and will be announced on the website as soon as they are scheduled.

 

MDS UK local groups

We started assisting the creation of informal local and regional groups – to enable patients to meet face to face more regularly and offer each other support.
Typically – these informal local meetings last 2-3 hours – either as a coffee morning – or in the late afternoon – depending on patient preference.
We actively encourage patients and families to help run these groups – as MDS UK does not have enough staff to be present at all these meetings.  Much assistance and support is provided though!
Please ask to start your own informal group.
The local groups do not replace the advice and assistance we give from our London office – nor the National Forum event days we organise every year.

 

Here is the list of the local groups that we help organise:

Oxford and Thames Valley Regional Group

Location: Churchill Hospital – Oxford Cancer and Haematology Centre,  Level 2,  Meeting room 1 – Churchill Drive – Headington – Oxford OX3 7LJ
This group meets every 4 months for 2-3 hours in the afternoon – led by the Haematology Clinical Research Nurse – Lianne Jones.  Prof Paresh Vyas often takes part and there are opportunities to ask questions.
We have now found 2 great patients who are co-running this group.
For more information and dates of meetings, please call:
Lianne Jones – Churchill Hospital on Tel: 01865 572023 – or check our Calendar of events

Exeter Area Patient Group

Location: Royal Devon & Exeter Hospital - Reception of Yarty Ward, Barrack Road – Exeter EX2 5DW
This group meets every 4 months for 2-3 hours in the afternoon – led by MDS patient John Watson and Haematology Support Specialist Tania Davidson.
In 2012 we would like to invite other local hospitals as far afield as Plymouth and Taunton to take part and host some meetings as well.
For more information and dates of meetings:
Tania – RD&E Hospital on Tel: 01392 402879 – or check our Calendar of Events

Essex Patient Group

July 2012 – Patient Chris Dugmore has started a local group.  She would like to hear from more Essex based patients and relatives please – to meet more frequently.
Please contact us at the main office if you wish to join, meet or help contribute to this group.
This group will alternate patient to patient support as well as informal physician presentations.
Check our website for meeting dates.

Anglia Regional Group – Cambridge based

Nine volunteers run this regional group – all of them MDS patients and relatives.  Activities will alternate between presentations and general get together opportunities.  The group meets at the Scotsdale Center in Cambridge.
Meeting dates will be advertised on our calendar of events. Click here to see the Anglia Region support group poster and for more information.
Further info: 0207 733 7558

London and King’s College Hospital Group KCH

New group – led by the Haematology Clinical Nurse Specialists at KCH.
2 meetings have been held to date – with the 3rd coming up 19th July – please check details on our Patient Events page – on the left.
This is a joint Aplastic Anaemia and MDS group – as patients share many issues, such as transfusions, risk of disease progression, tiredness, infections.
Location: Cicely Saunders Institute – King’s College Hospital.
For further information – 0207 733 7558 0 or check calendar of events.

Brighton and Sussex area

Now have their own group – thanks to 2 patients and a great team of nurses and clinicians at the hospital in Brighton.
Check dates on our events page and call us first if you have never contacted us before.  We will post you an information pack.

 

Other emerging local groups

Yorkshire/Leeds area – several patients interested in meeting regularly

Cardiff/Bristol/Weston-Super-Mare area– a forum will be held in 2012 – but we need more patient interest to establish a regular local group.

Midlands – strong interest from many patients – we will hold a forum in the area in 2012 – please register your interest in joining this group.

Dublin/Ireland – 1 forum was held in 2011 – we will set another one up in 2012 – but need to hear from more patients based in Ireland please.
A Facebook page for MDS Ireland has been created.

If you would like to start another regional group – please contact us.