Mesothelioma Support Services

Transcription

1 Asbestos Support Groups Mesothelioma Support Services Helpline There are a number of Asbestos Support Groups (ASGs) across the UK providing services for people with asbestos related diseases; Mesothelioma is just one of those diseases. Many of the Asbestos Support Groups are registered as a charity and they all provide similar services. They provide information and support for anyone affected by asbestos particularly regarding benefits and compensation. Many provide the opportunity for people affected by asbestos to get together as part of a group, all work hard to raise awareness about the dangers of asbestos and improve services for current patients and their families. Mesothelioma UK surveyed all the ASGs known to us in order to increase our understanding of the services that they provide and we have continued to work closely with those that went on to form the Asbestos Support Groups Forum. A majority are based within the north of England and Scotland where local asbestos industry and consumption has been greatest. However, whilst based predominantly in the north all the ASGs are willing to provide advice and information by or telephone to people living outside of their immediate geographical area. Asbestos Action Tayside Tel: Website: alison@asbestosactiontayside.org.uk Opening times: Monday to Friday 9am 5pm Asbestos Support West Midlands Tel: Website: asbestosinfo@wmht.co.uk Opening times: Monday Friday 9am until 5pm, the helpline is always staffed on Mondays, Tuesdays and Fridays between 10am and 2pm Barrow Asbestos Related Disease Support Tel Website: stmarys.barrow@virgin.net Opening times: Monday - Friday Bradford Asbestos Victims Support Group (BAVSG) Tel: hazard@what-bohp.freeserve.co.uk Opening times: Monday to Friday Page 1 of 6

2 Cheshire Asbestos Victims Support Group (CAVSG) Tel: Website: Opening times: Monday - Friday Clydebank Asbestos Group (CAG) Tel: Website: clydebankasbestos@ntlbusiness.com Opening times: Monday Thursday Friday Clydeside Action on Asbestos (CAA) Tel: Opening times: Monday - Friday Derbyshire Asbestos Support Team Tel: Website: mail@asbestossupport.co.uk Opening times: Monday - Friday Greater Manchester Asbestos Victims Support Group Tel: Website: asbestos.gmavsg@gmail.com Opening times: Monday - Friday Hampshire Asbestos Support and Awareness Group Tel: or Website: diane@hasag.co.uk or lynne@hasag.co.uk Opening times: Monday - Friday Merseyside Asbestos Victims Support Group (MAVSG) Tel: Website: gfr15@dial.pipex.com Opening times: Monday - Thursday Ridings Asbestos Support and Awareness Group (RASAG) Tel: Website: info@asbestos-action.org.uk Opening times: Monday - Friday Helpline Page 2 of 6

3 Sheffield and Rotherham Asbestos Group (SARAG) Tel: Opening times: Monday - Friday Mesothelioma Support Groups In addition to the support available from the ASG there are an increasing number of Mesothelioma specific support groups. Some are run by the ASGs and held within their premises or nearby venue. Some hospitals and hospices have set up Mesothelioma support groups that are run by healthcare professionals. These are usually held monthly within the hospital, have relevant invited speakers and provide a friendly welcome to all those affected by Mesothelioma. Brief details for all relevant support groups are listed below. For more detailed information please see our website or call the Mesothelioma UK Helpline on Freephone Please note: all these groups and their details are subject to change, therefore please check information before attending. BARDS - Barrow Asbestos Related Disease Support Contact Tel. No Area: Cumbria Services: A service for patients with any asbestos related disease, their families and carers. It is supported by St Mary's Hospice in collaboration with the Benefits Agency, Social Services, local unions, the Citizens Advice Bureau and expert lawyers all of whom send representatives to the meetings. People suffering from any asbestos-related disease (and their families or carers) are welcome to attend any meetings and access free information and advice from experts as above. In addition BARDS funds the BARDS mesothelioma nurse, Jennifer Culley, and medical and nursing support is available in people s homes if appropriate. BARDS holds a conference every other year and is a member of the national Forum of Asbestos Victims Support Groups. For patients with asbestos related disease, their families and carers BARDS meets one day a month in St Mary's Hospice Social Care Centre, Lesser Kings Hall, Hartington Street, Barrow in Furness (next to Furness Gymnastics) Southend Lung Cancer and Mesothelioma Support Group Contact no x Jolly.barber@southend.nhs.uk, Johanna.phelps@southend.nhs.uk Michelle.palmer@southend.nhs.uk Meets1 st Wednesday of each month at Coleman Street Chapel, 9 Colman Street, Southend on Sea, SS2 4AW. Page 3 of 6

4 Canvey,Basildon and Thurrock Lung Cancer and Mesothelioma Support Group - Contact no x3168 Jolly.barber@southend.nhs.uk Johanna.phelps@southend.nhs.uk Michelle.palmer@southend.nhs.uk Beverly.Waker@btuh.nhs.uk Bente.Idowu@btuh.nhs.uk Johanna.phelps@southend.nhs.uk Meets 3 rd Thursday of each month at The Paddocks Community Centre, Long Road, Canvey Island, SS8 0JA. Both the Southend and the Canvey, Basildon and Thurrock meetings begin at and last two hours. Groups will be informal, social and informative. A Clinical Nurse Specialist will be available each meeting for support and follow up if necessary to provide rapid access to the system according to the need of the patient. A Benefit Advisor will be available each meeting to provide advice and help with financial matters to the patients and carers. Free lunch will be provided. East & North Hertfordshire Lung Cancer/Mesothelioma Support Group. Contact: Patricia Swann x3319 Elaine Dockree Meets every 6 weeks at local hospital to provide support to patients/carers. East Midlands Mesothelioma Support Group Leicester. Contact Mesothelioma UK on Freephone Meets on last Wednesday of the month at Coping with Cancer, Helen Webb House, 35 Westleigh Road, Leicester LE3 0HH. For patients and their carers affected by Mesothelloma. Provides useful information and friendly support. East London Mesothelioma Support (ELMS) Freephone Helpline: Between Area: East London (Newham, Tower Hamlets, Hackney). Services: support, guidance and information for patients, carers, relatives and friends. Hampshire Asbestos Support & Awareness Group (HASAG) Contact: Lynne on or Diane on Support in Southampton Meets 2nd Thursday of each month at 10:30 at St Marks Church, Archers Road, Southampton, S015 2LU. Support in Portsmouth HASAG also meets on 4th Thursday of each month at 10:30 at The Inn Lodge, Burrfields Road, Portsmouth, PO3 5HH. A friendly environment for sufferers of all asbestos related diseases and their families including the bereaved. Hands of Time Mesothelioma Support Group - Contact Dimbleby Cancer Care on Richard Dimbleby Cancer Information & Support Service, 2nd Floor, Gassiot House, St Thomas Hospital, London, SE1 7EH. Meets 1st Tuesday of each month for patients/carers. Refreshments provided. Page 4 of 6

5 Mesothelioma Support Group at Guy's Hospital, London. Contact: Rachel Thomas Leeds Lung Cancer & Mesothelioma Patient Support (LAMPS) Support Group. Contact John White on Meets 1 st Wednesday of each month at Robert Ogden Centre, St. James Hospital, Leeds. Mesothelioma Self Help Group. Contact: (Mick Knighton Mesothelioma Research Fund). Aims to provide information and support to sufferers and their families. Offers a warm, friendly environment & welcomes all whose lives have been affected by Mesothelioma. Meets at Sir G B Hunter Memorial Hospital in Wallsend on last Friday of each month Refreshments provided. Medway/Swale Lung Cancer & Mesothelioma Support & Information Group. Contact: Frances McKay, Macmillan Lung /Mesothelioma Nurse, Medway Maritime Hospital on , Caroline Williams, Macmillan Lung Nurse, Medway Maritime Hospital on or Pat Cameron, Domiciliary Team Nurse, Wisdom Hospice on Offers a welcome environment with mutual support and information for Lung Cancer/ Mesothelioma patients /carers. Meets 1st Tuesday of each month from at the Day Centre, Wisdom Hospice, St Williams Way, Rochester. Mesothelioma Support Group at Royal Marsden Hospital, Surrey. Contact: Natalie Doyle on Ext 1791 or Sonja Watson on Refreshments are available & transport can be provided. Mesothelioma Support Group at Papworth Hospital, Cambridge. Contact: Gerry Slade, Mesothelioma Specialist Nurse on Ext Meets at Papworth Hospital every 6 weeks for patients/ carers. A separate meeting every 6 weeks is specifically for carers to share concerns and experiences with others in a similar situation. Swindon & South West Support Groups. Contact: Mrs Pat Lewis Tel: a group for widows /partners of asbestos sufferers. Meets monthly for friendship. mutual support & practical help for those nursing a family member with asbestos disease. Contact Janice Howell on for group for patients and their partners. Meets for mutual information & support. Contact Maureen Seabrook for Wives & Widows Group Exeter. Meets monthly for friendship and mutual support. West Hertfordshire Trust Support Group. Contact: Linda Charalambous on For all West Hertfordshire Trust lung cancer / mesothelioma patients. Held on 1st Tuesday of each month at Stanborough Centre, 609 St Albans Road, Garston, Herts. WD25 9LJ. Page 5 of 6

6 General Support Mesothelioma Discussion Forum The Macmillan Cancer Support Share website section includes a discussion forum for anyone affected by Mesothelioma. Website Link: Starting a Support Group You can also access useful information regarding self help and support groups including guidelines for setting up a cancer self help or support groups on the Macmillan Cancer Support website. Website Link: aspx YouthLine If you know someone between 12 and 21 years old and someone close to them has Mesothelioma and they need to talk they can call the Macmillan YouthLine on: youthline@macmillan.org.uk Monday - Friday MESOTHELIOMA UK PROVIDES SPECIALIST, IMPARTIAL, UP TO DATE SUPPORT AND INFORMATION This information has been prepared for Mesothelioma UK by the Mesothelioma Nurse Action Team:- Author: Tracey Heseltine and Liz Darlison, Leicester. Date: June 2010 Download Mesothelioma UK information from or to request a copy tel or mesothelioma.uk@uhl-tr.nhs.uk To sponsor or donate to Mesothelioma UK contact: The Mesothelioma UK Charitable Trust:- Mesothelioma.ukcharity@uhl-tr.nhs.uk Freephone: c/o The University Hospitals of Leicester NHS Trust, Glenfield Hospital, Hospital Management Offices, Groby Road, Leicester LE3 9QP Page 6 of 6