Infosheet
Myeloma and Haematology Support Groups This is a list of Support Groups for people affected by myeloma and associated plasma cell disorders. Support Groups provide an opportunity to share information and experiences with other patients and their relatives, in an informal and supportive setting. There are currently around 48 Myeloma and Haematology Support Groups in the UK. Some are myeloma-specific, whilst others are general haematology groups that welcome those affected by myeloma. The groups vary in size and focus, and meet in clinics, cancer centres, churches, community centres, cafes or people's homes. Some groups are run by patients or relatives, others by healthcare professionals such as nurses or counsellors. The details on this Infosheet are provided by the groups themselves. Most of the groups are run independently of Myeloma UK, so we are unable to take responsibility for the information they provide or for the level of support offered. We review and update this list regularly. Myeloma UK is on hand to offer a range of additional resources to help with the best practice and development of Support Groups in this list including: Group visits and talks about the work of Myeloma UK Scheduled annual training workshops Customised training workshops i.e. those specifically requested by an individual group Practical advice and troubleshooting about any group issue In addition we have a pack for Support Group Leaders which sets out a range of best practice ideas and practical advice about how to develop your group.
What if there isn't a group in my area? There are areas of the country where patients and their families do not have a Myeloma or Haematology Support Group nearby. Myeloma UK Broughton House 31 Dunedin Street Edinburgh EH7 4JG Tel: 0131 557 3332 Fax: 0131 557 9785 Myeloma Infoline: 0800 980 3332 www.myeloma.org.uk Charity no. SC 026116 National Myeloma Week 21 - 28 June
At the end of this Infosheet, you will find information on how to access general cancer support groups which, although not specific to myeloma, can still be valuable sources of support and information. You may decide you would like to set up a new Myeloma Support Group in your area, in which case Myeloma UK would love to hear from you. We can offer potential group leaders help in setting up, promoting and maintaining their group. For more information about how to set up a Support Group and how Myeloma UK can help with this, please contact Rebecca Wight on 0131 557 3332 or email rebecca@myeloma.org.uk
Myeloma and Haematology Support Groups England North East
pg3
Doncaster Leeds Goole Grimsby Middlesbrough York
Midlands
pg4
pg7
Belfast
Scotland
pg3 -4
Bury Cumbria Liverpool
Birmingham Chesterfield Dudley Leicestershire and Rutland Lincoln Nottingham Shrewsbury Telford
Northern Ireland
North West
South East
pg5 – 6
South West
London Reading Royal Free Hospital London South London Brighton Cambridge Colchester Gillingham Ipswich Norwich Surrey Tunbridge Wells Welwyn Garden City
Barnstaple Bournemouth Bristol Dorchester Exeter Isle of Wight Southampton
Ireland
Wales
ARC Dublin Newbridge Tullamore
pg7
pg6 – 7
pg7
Cardiff
pg8
Dunfermline Edinburgh Fife Glasgow Perth
2
England North East Doncaster
Leeds
Haematology Support Group Doncaster Royal Infirmary, Armthorpe Road, Doncaster 2.30pm to 3.30pm, last Wednesday of every month Stacey Nutt, Macmillan Nurse Specialist 01302 553 211 Stacey.NUTT@ dbh.nhs.uk
Myeloma Support Group Robert Ogden Centre, St. James's University Hospital, Beckett Street, Leeds LS9 7TF 1.30pm, last Friday of every month Rita Rumsey 0113 252 0097 rita.rumsey@ntlworld.com
Goole
Grimsby
Myeloma Support Group Dining Room, Goole District Hospital, Woodland Avenue, Goole Call for more details Margaret Chadwick 01977 661 025 rmchadwick@aol.com
Myeloma Support Group Princess of Wales Hospital, Scartho Road, Grimsby, DN33 2BA Call for more details Dianne Savage, Haematology CNS 01472 874 111 Dianne.Savage@nlg.nhs.uk Ray Wass 01472 827 537 raywass@virgin.net
Middlesbrough
York
Myeloma Support Group Day Unit, Haematology Department, University Hospital, North Tees, Hardwick Road, Stockton-onTees TS19 8PE Please call for meeting details Liz Dobson 01642 562 505 Rebecca Wight, Myeloma UK 0131 557 3332 rebecca@myeloma.org.uk
Myeloma Support Group Cancer Care Centre, York District Hospital, Wigginton Road, York YO31 8HE 1.30pm, first Wednesday of every month Jane Wilson jane@cpwilson.com Rebecca Wight, Myeloma UK 0131 557 3332 rebecca@myeloma.org.uk
North West Bury
Cumbria
North Manchester and Bury Myeloma Support Group Elizabethan Suite, Bury Town Hall, Knowsley Road, Bury BL9 0SW 1pm to 3pm, approximately every six weeks, Please call for details or check the website Ann Urmston ann_urmston@yahoo.co.uk 0161 653 6174 Joan Smith joansmith.parrfold@btintenet.com 0161 766 4669 W www.myeloma-nmb.org.uk
Myeloma Support Group Oncology Day Unit, Furness General Hospital, Dalton Lane, Barrow in Furness LA14 4LF 5.30pm, first Tuesday of every month Maureen Kirk 01229 491 288 mtkirk@hotmail.co.uk
3
Liverpool Haematology Support Group Sunflowers, 21 Aigburth Road, Aigburth, Liverpool L17 4JR 6pm to 8pm, Tuesday evening, approximately every four weeks Linda Boyne, Haematology Nurse 0151 706 2000 bleep 4286 0151 706 2279 Sunflowers 0151 726 8934
Midlands Birmingham
Chesterfield
Haematology Support Group Centre for Clinical Haematology, University Hospital, Birmingham 7pm to 9pm second Wednesday of every month Debbie Palmer, Clinical Nurse Specialist 0121 472 1311 Ext. 8299 Jane Nunnick, Clinical Nurse Specialist 0121 472 1311 Ext. 8120 jane.nunnick@uhb.nhs.uk
Myeloma Support Group Chesterfield Hospital, Calow 12:30 to 2:30pm, every eight weeks, Friday afternoon Angela Gascoigne, Haematology Nurse Specialist 01246 512 792 Angela.Gascoigne@chesterfieldroyal.nhs.uk
Dudley
Leicestershire and Rutland
Haematology Support Group Russells Hall Hospital, Pensnett Road, Dudley Every three months, Monday evening Ros Bratt-Wyton, Clinical Nurse Specialist 01384 244 028 ros.bratt-wyton@dgoh.nhs.uk Leukaemia Care Helpline 0800 169 6680
Myeloma Support Group Helen Webb House, 35 Westleigh Road, Leicester, LE3 0HH 10am to 12pm, every second Wednesday of every month Jenny Rogers Macmillan Haematology Nurse Specialist 0116 258 7246 bleep 5406 Helen Webb House 0116 223 0055
Lincoln
Nottingham
SMYLLE Haematology Support Group St Barnabas Hospice, Hawthorn Road, Lincoln 7pm to 9pm, last Thursday of every month Claire Glaser 01522 751 525
Myeloma Support Group Village Hall, Kirklington Road, Rainworth, Mansfield 6.30pm – 8.30pm, please call for details Susanne Cable 01623 491 380 susanne.cable@sky.com
Shrewsbury
Telford
Haematology Support Group Royal Shrewsbury Hospital, Mytton Oak Road, Shrewsbury 7.30pm to 9.30pm bi-monthly third Tuesday of the month Fiona Buckley or Bridget Atkins Haematology Nurse Specialist 01743 261 057
Shropshire Haematology Support Group Park Hotel, Whitchurch Road, Wellington, Telford 7pm to 9pm, every second Tuesday of month Marion Griffin 01952 253 019 Debbie Miller 01952 585 319
4
England South East London
Reading
Myeloma Support Group Malet Place, Engineering Building, University College, off Torrington place, London, WC1E 7JG Every two months Saturday 10.30am to 1pm Rebecca Wight, Myeloma UK 0131 557 3332 londonmyelomasg@yahoo.co.uk
Myeloma Support Group Maiden Place Community Centre, Lower Earley, Reading, RG6 3HE Saturday, please contact for details 10am -12pm Lyn Holman 0118 9265 914 mm@hollyn.eclipse.co.uk W www.hollyn.eclipse.co.uk/mm
Royal Free Hospital London
South London
Haematology Patient Meeting Royal Free Hospital, Pond Street, London, NW3 2QG Three times a year. Please call for details Sue de Botton, Haematology Counselling Service Coordinator Maria Schmitt-Castilla 0207 794 0500 Ext 36859 Counselling Line 0207 472 6640
Myeloma Support Group Dimbleby Cancer Centre, Gassiot House, St. Thomas’ Hospital, London SE1 7EH 6.30pm – 8pm, Quarterly meetings Orla Stewart, Clinical Nurse Specialist 020 7188 7188 Beep 1246 020 7188 2755 (voicemail) Orla.Stewart@gstt.nhs.uk
Brighton
Cambridge
Myeloma Support Group Audrey Emerton Medical School, Eastern Road, Brighton BN2 5BE 6pm to 8pm Quarterly meetings Nicola Worcester, Nurse Specialist 01273 696955 ext 4693 bleep 8309 Nicola.Worcester@bsuh.nhs.uk
Myeloma Support Group The Cambridge Cancer Help Centre, Scotsdale’s Garden Centre, Cambridge Road, Gt Shelford, Cambridge CB22 5JT 2.00pm, first Wednesday of the month Anne Fleming 01223 503 322 annie.fleming@ntlworld.com George Cowie 01223 510 868
Colchester Myeloma Support Group Primary Care Centre,Turner Road, Colchester, CO4 5JR Three times a year, please call for details Joanne Tonkin Haematology Nurse Consultant 01206 742 414 Joanne.tonkin@colchesterhospital.nhs.uk
5
England South East Gillingham
Ipswich
Kent Haematology Support Group Medway Maritime Hospital, Windmill Road, Gillingham 4pm to 6.30pm, Wednesday, monthly Sarah Bucknell, Macmillan Nurse 01634 825 186 sarah.bucknell@medway.nhs.uk
East Suffolk Myeloma Support Group Ipswich Hospital, Heath Road, Ipswich 6pm, Tuesday, bi- monthly Sadie Gillingham Haematology Nurse Specialist 01473 704 037 sadie.gillingham@ipswichhospital.nhs.uk
Norwich
Surrey
Norwich & Norfolk Myeloma Support Group Sprowston Senior Citizens Club, Wroxham Road, Sprowston, Norwich NR7 8EN and the Big C Centre Call for more details Lynette Collier 01603 483 327
Myeloma Support Group Virginia Water, Surrey 7pm, last Wednesday of the month, Bi-monthly Carole Jones 01344 841 356 07968 348481 Carole@totallyuk.com
Tunbridge Wells
Welwyn Garden City
Myeloma Support Group Kent and East Sussex Bells Yew Green Village Hall, 2 miles south of Tunbridge Wells 7pm-9pm, Wednesday, bi-monthly Liz West 01892 537 255 email@elizabethwest.com
Myeloma Support Group Blackhouse Room, 116 Handside Lane, AL8 6SZ Bi-monthly Selina Cole 07880 726764 selwgc@o2.co.uk
South West Barnstaple
Bournemouth
Devon Myeloma Support Group Barnstaple Library, Devon 2pm, every third Tuesday, bi-monthly Melanie Bowyer, Haematology Clinical Nurse Specialist 01271 370 247 or 01271 322 577 Bleep 203 Melanie.Bowyer@ndevon.swest.nhs.uk
Haematology Support Group Durley Hall Hotel, West Cliff, Bournemouth 6.30pm, first Tuesday of the month Gillian Beavis 01202 526 722
Bristol
Dorchester
Myeloma Support Group UHCT Community Centre, Eden Grove Methodist Church, Horfield, Bristol, BS7 0PQ 7pm to 9pm, Tuesday, bi-monthly Sylvia 01275 833 106 Sylvia268@aol.com
Dorset Haematology Support Group Children's Centre, Dorset County Hospital, Damers Road, Dorset 6.30pm to 8pm, Monday or Tuesday bi-monthly Karen Buckingham, Chemotherapy Staff Nurse Angela Wood, Haematology Nurse Specialist 01305 254 359 Ext. 4359 Angela.Wood@wdgh.nhs.uk
6
England South West Exeter
Isle Of Wight
Myeloma Support Group Royal Devon and Exeter Hospital Haematology Unit, Barrack Road, Exeter 6.30pm to 8pm, last Wednesday of the month Jayne Dark, Haematology Nurse Specialist 01392 402 879 Jayne.Dark@rdeft.nhs.uk
Myeloma Support Group Benbridge Community Centre, Benbridge, Isle of Wight Please contact for details Linda Marlow lillypad2607@hotmail.co.uk 01983 873 929
Southampton
Northern Ireland
Wessex Myeloma Support Group Royal South Hants Hospital, Brinton Terrace, Southampton 10.30am – 12.30pm, four times a year Anne and John Richardson aru.1309@yahoo.co.uk 01425 619 940 Rebecca Wight, Myeloma UK 0131 557 3332 rebecca@myeloma.org.uk
Belfast Myeloma Support Group Ulster Cancer Foundation, Eglantine Avenue, Belfast 7.30pm to 9pm, Monday, four times a year Eileen Creery or Karen Hooper, Ulster Cancer Foundation (UCF) Freephone UCF 0800 783 3339 02890 663 281 eileencreery@ulstercancer.org karenhooper@ulstercancer.org
Ireland ARC
Newbridge
Myeloma Support Group ARC House, 559 South Circular Road, Dublin 7pm – 9pm, first Tuesday of the month Celine Delaney 086 8293264 celdel51@gmail.com W www.arccancersupport.ie
Myeloma Support Group Parish Centre, Station Road, Newbridge, Co.Kildare 7.30pm to 9.00pm, third Monday of the month Brenda Drumm 08723 37797 mymyeloma@gmail.com W www.mymyeloma.ie
Wales Tullamore
Cardiff
Midlands Myeloma Support Group Dochas Offaly Cancer Support centre Tullamore, Co Offaly Mary Kelly, Tullamore General Hospital 05793 21501 Bleep 317 Nancy St John 05793 28268 maryb.kelly@hse.ie W www.mymyeloma.ie
South Wales Myeloma Support Group Canolfan Beulah Church Community Centre, Beulah Road, Cardiff CF14 6LX. 7pm to 8.30pm, bi-monthly, on a Thursday Jenny Thomas 02920 734 955 jennyandmartint@yahoo.co.uk Rebecca Wight, Myeloma UK 0131 557 3332 rebecca@myeloma.org.uk
7
Scotland Dunfermline
Edinburgh
Haematology Support Group Haematology Unit, Queen Margaret Hospital, Whitefield Road, Dunfermline Monthly in evening. Please call for details Jill Martin, Clinical Nurse Specialist 01383 623 623 Ext. 2421 jill.martin@faht.scot.nhs.uk
Haematology Support Group Maggie's Centre, Western General Hospital, Crewe Road, Edinburgh 5.30pm to 7pm first Wednesday of every month Maggie's Centre 0131 537 3131 Andrew@maggiescentres.org
Edinburgh
Fife
Myeloma Support Group Bruntsfield Hotel (Lounge), Bruntsfield Place, Edinburgh 11am to 12.30pm second Tuesday of every month Rebecca Wight, Myeloma UK 0131 557 3332 rebecca@myeloma.org.uk
Myeloma Support Group Maggie's Centre, Victoria Hospital, Hayfield Road, Kirkcaldy, Fife, KY12 0SU 2pm-3.30pm, last Tuesday of every month please call for details Sheila Cargill 01592 591 109 W www.myelomapeople.org.uk
Glasgow
Perth
Myeloma Support Group Maggie’s Centre, Dumbarton Road, Glasgow, G11 6PA 7pm to 9pm Thursday evening, every six weeks Lesley Stirton, Clinical Nurse Specialist lesley.stirton@northglasgow.scot.nhs.uk Rebecca Wight, Myeloma UK 0131 557 3332 rebecca@myeloma.org.uk
Myeloma Support Group Perth Baptist Church, Almond View, Perth, PH1 1QQ 7pm to 9pm, bi-monthly, second Wednesday of the month (not December) John and Mary Kenney 01738 441 101 jrkenney@btinternet.com
8
Myeloma Support Groups If you would like to set up a Myeloma Support Group in your area, we would love to hear from you. Myeloma UK is keen to offer individuals running a group all the help they need in terms of setting up, promoting and maintaining their group. To find out how to go about setting up a Support Group, and the support available from Myeloma UK, please contact Rebecca Wight, Patient to Patient Programmes on 0131 557 3332 or email rebecca@myeloma.org.uk
About this Infosheet The information in this Infosheet is not meant to replace the advice of your medical team. They are the people to ask if you have questions about your individual situation. All Myeloma UK publications are extensively reviewed by patients and healthcare professionals prior to publication.
Other information available from Myeloma UK Myeloma UK has a range of Essential Guides, Infoguides and Infosheets available, covering many areas of myeloma, its treatment and management. To order your free copies, contact the Myeloma Infoline on 0800 980 3332. This information is also available 24/7 on our website at www.myeloma.org.uk. If you would like to talk to someone about any aspect of myeloma, its treatment and management, call the Myeloma Infoline on 0800 980 3332. Your call will be answered by Myeloma Information Specialists who are supported by medical advisors. The Myeloma Infoline is open from Monday to Friday, 9am to 5pm, and is free to phone from anywhere in the UK. From outside the UK, call +44 131 557 3332 (charged at normal rate). Author: Editor: Issue date:
Ellen Watters, Myeloma UK Rebecca Wight, Myeloma UK June 2010
9