|
Information project partner organisations
The Brain and Spine Foundation began working with a number of partner organisations as part of our Big Lottery funded information project to improve access to information about neurological conditions.
Though this project has now ended, the partnership continues. Through these organisations we are reaching even more people affected by brain and spine conditions.
Though this project has now ended, the partnership continues. Through these organisations we are reaching even more people affected by brain and spine conditions.
Although we handle 50,000 requests for information every year through our website and our Helpline, we know that there are potential service users who may benefit from our information services but who are not yet aware of them. Working with partner organisations, including charities, hospital PALS departments and information centres and others, we hope to reach people who may not have access to the internet, or have not been directed to our helpline services by their hospital or GP.
The organisations working with us so far are:
The mission of Astro Fund is to fund low-grade brain tumour research and to provide a focus for the low-grade brain tumour community by offering a source of information, inspiration, connections and hope.
Astro Fund are working to find a cure for low-grade brain tumours by raising money to support low-grade glioma research projects at the most innovative neuro-oncology research centres in the UK.
Astro Fund offers information, inspiration and support to help patients, carers, friends and relatives through the challenges of living with a slow growing brain tumour, via the Astro Fund website. Astro Fund also runs an online support group which includes nearly 300 people from all over the world.
The Astro Fund website aims to bring together the key information related to the low-grade glioma community in the UK, whilst information related to the American and European experience can be gained through the online support group.
BIRT offer a range of services to meet the needs of people at different stages of rehabilitation - including assessment, intensive rehabilitation, continuing rehabilitation, and community-based support. These services are offered in one of 12 specialist residential centres and 28 supported houses, located in England and Scotland. Click www.birt.co.uk/whereweare for locations.
BIRT currently support over 550 people with acquired brain injury, a figure which will rise substantially with several new service developments planned.
The charity's clinical expertise, combined with excellent facilities and a dedication to care, gives each individual the best possible chance of rehabilitation following an acquired brain injury. All BIRT programmes follow their established ‘neurobehavioural’ approach.
BIRT also offer a range of information resources for people with brain injury and their families. Please visit the "download" section of the BIRT website to access these.
BIRT is a division of The Disabilities Trust, which provides services to people with physical impairments, autism and learning disabilities, as well as brain injury.
brainstrust is a UK based brain cancer charity, dedicated to improving clinical care for brain tumour sufferers and providing co-ordinated support in their search for treatment. The charity provides support and advice at the point of diagnosis and beyond, by updating treatment, improving care and, ultimately, saving lives.
brainstrust is the brain cancer charity which supports patients at the point of diagnosis, but also looks beyond this point to improve the treatment, care and outcomes of all patients who are diagnosed with a brain tumour.
brainstrust:
Brain Tumour Research and Support Across Yorkshire is Yorkshire's leading brain tumour charity providing emotional and financial support for patients and carers throughout the county. The charity also funds research and is one of two founding charities that support the Translational Neuro-Oncology Group at Leeds University, taking a fresh look at brain tumour research.
The Cancer Information Centre provides a drop-in service at Leicester Royal Infirmary and can also be contacted by post, phone or email. Contact:
Cancer Information Centre
Osborne Building
Leicester Royal Infirmary
Leicester
LE1 5WW
Tel: 0116 258 6189
Web: www.uhl-tr.nhs.uk/cancerinfo
Patient information officers can help patients to find the information they need and will put patients in touch with any appropriate services.
The Centre has a wide range of up-to-date information leaflets, books, videos, DVDs, CDs and audio tapes.
Cavernoma Alliance UK is a charity created by people with cavernoma, otherwise known as cavernous angioma, cavernous haemangioma or cerebral cavernous malformation (CCM). The charity’s mission is to improve the quality of life for those affected by cavernomas through education, support, and promotion of research.
Cavernoma Alliance UK provides information about cavernoma, regular events for people affected by cavernoma, and news about the latest research.
Connect is a charity for people living with aphasia, a communication disability which usually occurs after stroke. It can also be caused by brain injury or tumour. The charity's mission is to improve the lives of people living with aphasia and communication disability, equipping them to re-connect with life. Connect:
Different Strokes is a national charity launched in 1996 by younger stroke survivors for younger stroke survivors, for the purposes of active self-help and mutual support.
Different Strokes provides throughout the UK:
The Health Information Centre is located on the ground floor, in the main entrance to the University Hospital in Coventry and is equipped with patient information about conditions, treatments and illnesses. There is also free internet access and staff on hand to help with any information requests that patients may have.
The Centre is open from 9am to 5pm, Monday to Friday and ensures that all patients, staff and visitors, have access to high quality health information on conditions, procedures and treatments.
The address is:
Health Information Centre
UHCW NHS Trust
University Hospital
Clifford Bridge Road
Coventry CV2 2DX
Enquiries can also be made in person, by telephone or by email:
Telephone 024 7696 6051
email: health.information@uhcw.nhs.uk
I Have IIH is a website where people can share diverse experiences on coping with idiopathic intracranial hypertension (IIH). It is the Official IIH Support Group for the world-wide organisation IH Brainpain.
The website, run by people with experience of IIH, offers constructive advice based on experience and success. Although it does offer information on the various topics related to IIH, the site primarily aims to help people with IIH to achieve a more positive and productive life with this condition.
Walkergate Park for Neurorehabilitation & Neuropsychiatry is based in Newcastle upon Tyne, and provides services for people with neuro disabilities caused by disease, illness or accident. These can include major physical disabilities that affect mobility, self-care, and everyday activities or disturbances of cognition or behaviour. The centre brings together existing rehabilitation, behavioural and psychiatry services in the region into a fully integrated service. This centre will pave the way for facilities, which will lead to better research and development of best practice, both nationally and internationally.
The Knowledge Centre has been designed to allow patients and their relatives (or carers) to access high quality, up to date, relevant information on a range of related topics.
There is a collection of leaflets and booklets available in the centre. Most leaflets are free. If you need any information on subjects connected to neurorehabilitation, you can also contact the Knowledge centre in person, by email, telephone, or in writing. This service is confidential and free.
The Knowledge Centre is situated next to the main entrance of Walkergate Park and is open 10am – 4pm Monday - Friday.
For more details contact:
Knowledge Centre
Northumberland Tyne & Wear NHS Foundation Trust
Benfield Road
Newcastle upon Tyne
NE6 4QD
Tel: 0191 2875030
Email: library.enquiries@ntw.nhs.uk
Neuro Partners are specialists in delivering tailored support packages to individuals, in particular those with neurological conditions. They use a person-centred approach and all of their packages are designed to meet the requirements of the individual service user whether at home, in the community, educational setting or workplace.
Their Person Centred Approach is more than just service user involvement, it’s individual to and owned by the person being supported.
The services provided to individuals and their families can range from as little as 2 hours per week community integration, to 24 hour complex needs support, and may include:
Neurosupport provides advice, information and support to people with a neurological condition, their families, carers, health and social care professionals. It is also concerned to raise the awareness of neurological conditions in the community at large. There is a comprehensive library with information on a large number of neurological conditions and related disability issues; an enquiry service, bi-monthly newsletter and website.
The Working Life Service, part of Neurosupport, offers support and advice to people with neurological disorders on issues surrounding employment, work retention, retraining and alternatives to work. The Neurolife project offers advice and courses for people looking to improve their quality of life.
A non medically led, client centred, specialist case management and rehab team for people who have suffered a moderate or severe traumatic brain injury and are aged 16 years and over and registered with a Nottingham GP.
Consists of:
Contact:
The Nottingham Traumatic Brain Injury Service
Nottingham University Hospitals NHS Trust
City Hospital Campus
Mobility Centre
Hucknall Road
Nottingham
NG5 1PJ
Tel: 0115 9691169 ext 55150
Fax: 0115 9934904
Email: denise.shipman@nuh.nhs.uk
OUCH (UK) exists to raise general awareness of cluster headache within the medical profession and the general public.
OUCH (UK) offers support and guidance to sufferers and their families and works closely with the Institute of Neurology in London where Dr Manjit Matharu runs the Headache Group.
The Group conducts clinical and laboratory-based research into the mechanisms and management of headache syndromes. Their main interests are trigeminal autonomic cephalalgias - in particular cluster headache - and migraine. The Group is widely acknowledged to be amongst the foremost clinical/translational groups in headache in the world. Many members, both sufferers and supporters, have participated in the research carried out there.
OUCH (UK) produces regular newsletters/information leaflets and to date has held several regional meetings around the country and holds a National Conference every two years.
The Royal Hospital for Neuro-disability (RHN) is a national medical charity providing assessment, rehabilitation treatment, and care for adults with profound and complex disabilities caused by disease or damage to the brain or other parts of the nervous system.
The Hospital, based in Putney, South West London, offers a range of rehabilitation, respite, transition to community and community support services, as well as longer-term care including ventilator services and the UK’s largest specialist service for advanced Huntington’s disease.
People at the Hospital may have a brain injury caused by an accident, infection, lack of oxygen to the brain, or a clot or bleed into the brain causing a stroke. Others may have any of a range of degenerative neurological illnesses, such as multiple sclerosis or Huntington’s disease.
The academic arm of the Hospital, the Institute of Neuropalliative Rehabilitation, carries out vital research into all aspects of clinical management of people with rare, complex, and chronic neurological conditions. The Institute provides families, professionals, and policymakers with a broad range of information, collaborating with organisations around the world to bring best practice, high standards, and innovative treatment to people with profound disability.
Shine (formerly ASBAH) is a registered charity, which was formed in 1966, initially to help families and individuals affected by spina bifida and hydrocephalus.
Today Shine is a community of individuals,families, friends and professionals, sharing achievements, challenges and information on living with hydrocephalus, or spina bifida, and related issues.
The Shine website and Facebook page provide opportunities to communicate on any topic of interest.
Together Shine also campaign for equality both directly with local and national government but also through informing our members of surveys and consultations and events they can take part in to ensure their voices are heard.
Of course, Shine also continues to provide a wide range of services – from direct support and information, to campaigning and research.
Working throughout England, Wales and Northern Ireland Shine aims to provide help on any matter related to the conditions it covers*, including:
Shine also support research and campaigns aimed at helping to improve the lives of individuals and families living with spina bifida or hydrocephalus.
*As well as spina bifida and hydrocephalus, Shine provides information and advice and support on:
Speakability is the national charity that supports and empowers people with Aphasia to overcome the barriers they face by:
Speakability puts people with Aphasia at the very centre of the organisation, and they are involved as volunteers, Trustees and members of staff. Groups are run according to the Self-Help model to ensure that people with Aphasia have a say in how their Group is run and the activities that the Group arranges.
People with Aphasia, their carers and health professionals are also consulted and fully involved in the writing and design of Speakability's publications, communication tools and website.
The Spinal Cord Tumour Forum is a website for people in the UK who have had, or whose lives have been affected by, benign spinal cord tumours. It was created and is run by spinal cord tumour sufferers, and for many users of the website this will be their first contact with another sufferer.
As well as a forum, the website contains information on spinal cord
tumours, personal stories and news updates.
The Spinal Injuries Association (SIA) is the leading national charity for spinal cord injured people. The SIA is unique in that it is a user led organisation; its elected Trustees are all spinal cord injured and are voted for by the spinal cord injured membership.
The SIA aims to:
The Surrey Dizziness Service is based at the Royal Surrey County Hospital in Guildford. The department offers diagnostic and management services for dizzy patients throughout Surrey and neighbouring areas.
The service is provided by the Audiology Department but there are links established with the Falls Clinic, Otorhinolaryngology, Physiotherapy, and Psychology.
The service offered helps patients with various inner ear disorders including Benign Paroxysmal Positional Vertigo, Meniere’s disease, and Labyrinthitis.
The latest technology is available for testing and patient diagnosis. The clinicians believe that each patient is an individual and thus treatment programs are developed by mutual agreement.
Development and training are also highly important factors, so seminars are offered annually in the Education centre.
Contact information:
Nicola Topass
Team Leader (Balance Service)
Audiology Department
Royal Surrey County Hospital
Egerton Road
Guildford
Surrey
GU2 7XX
The Health Shop provides free health promotion information, plus advice and support to hospital staff, patients, visitors, and students. There is an extensive range of health promotion literature, plus access to databases of local and national self-help and support groups. A member of staff is available to answer queries too.
The Health Shop is open Monday to Friday from 10am - 4pm.
For more information, please contact:
Helen J Brady
Health Shops Manager and Heartstart Discovery Co-ordinator
The Health Shop
Level 7
Ninewells Hospital and Medical School
DUNDEE
DD1 9SY
or
Jodi Moodie
Health Shop Adviser
Address as above
Tel: (01382) 633859/740400
Email: helenjbrady@nhs.net; jodi.moodie@nhs.net
The Transverse Myelitis Society is a UK registered charity, run by volunteers, with over 750 members.
Membership is free, and new members receive a pack containing information about transverse myelitis.
On the Society's website, members can:
The UK Transverse Myelitis Society is affiliated with the worldwide organisation The Transverse Myelitis Association.
The organisations working with us so far are:
Astro Fund
The mission of Astro Fund is to fund low-grade brain tumour research and to provide a focus for the low-grade brain tumour community by offering a source of information, inspiration, connections and hope.
Astro Fund are working to find a cure for low-grade brain tumours by raising money to support low-grade glioma research projects at the most innovative neuro-oncology research centres in the UK.
Astro Fund offers information, inspiration and support to help patients, carers, friends and relatives through the challenges of living with a slow growing brain tumour, via the Astro Fund website. Astro Fund also runs an online support group which includes nearly 300 people from all over the world.
The Astro Fund website aims to bring together the key information related to the low-grade glioma community in the UK, whilst information related to the American and European experience can be gained through the online support group.
- Website: www.astrofund.org.uk
- Support group: http://health.groups.yahoo.com/group/gliomasupport
- Email: info@astrofund.org.uk
BIRT (Brain Injury Rehabilitation Trust)
BIRT offer a range of services to meet the needs of people at different stages of rehabilitation - including assessment, intensive rehabilitation, continuing rehabilitation, and community-based support. These services are offered in one of 12 specialist residential centres and 28 supported houses, located in England and Scotland. Click www.birt.co.uk/whereweare for locations.
BIRT currently support over 550 people with acquired brain injury, a figure which will rise substantially with several new service developments planned.
The charity's clinical expertise, combined with excellent facilities and a dedication to care, gives each individual the best possible chance of rehabilitation following an acquired brain injury. All BIRT programmes follow their established ‘neurobehavioural’ approach.
BIRT also offer a range of information resources for people with brain injury and their families. Please visit the "download" section of the BIRT website to access these.
BIRT is a division of The Disabilities Trust, which provides services to people with physical impairments, autism and learning disabilities, as well as brain injury.
- Visit: www.birt.co.uk
brainstrust
brainstrust is a UK based brain cancer charity, dedicated to improving clinical care for brain tumour sufferers and providing co-ordinated support in their search for treatment. The charity provides support and advice at the point of diagnosis and beyond, by updating treatment, improving care and, ultimately, saving lives.
brainstrust is the brain cancer charity which supports patients at the point of diagnosis, but also looks beyond this point to improve the treatment, care and outcomes of all patients who are diagnosed with a brain tumour.
brainstrust:
- supports patients and their families
- works with hospitals to secure care pathways for patients
- campaigns and advocates on behalf of the brain tumour community
- funds technology for treatment (e.g. intra-operative MRI)
- funds research that translates into clinical practice (e.g. functional imaging)
- Visit: www.brainstrust.org.uk
Brain Tumour Research and Support Across Yorkshire (incorporating Andrea's Gift)
Brain Tumour Research and Support Across Yorkshire is Yorkshire's leading brain tumour charity providing emotional and financial support for patients and carers throughout the county. The charity also funds research and is one of two founding charities that support the Translational Neuro-Oncology Group at Leeds University, taking a fresh look at brain tumour research.
- Visit: www.btrs.org.uk
Cancer Information Centre, University Hospitals of Leicester NHS Trust
The Cancer Information Centre provides a drop-in service at Leicester Royal Infirmary and can also be contacted by post, phone or email. Contact:
Cancer Information Centre
Osborne Building
Leicester Royal Infirmary
Leicester
LE1 5WW
Tel: 0116 258 6189
Web: www.uhl-tr.nhs.uk/cancerinfo
Patient information officers can help patients to find the information they need and will put patients in touch with any appropriate services.
The Centre has a wide range of up-to-date information leaflets, books, videos, DVDs, CDs and audio tapes.
Cavernoma Alliance UK
Cavernoma Alliance UK is a charity created by people with cavernoma, otherwise known as cavernous angioma, cavernous haemangioma or cerebral cavernous malformation (CCM). The charity’s mission is to improve the quality of life for those affected by cavernomas through education, support, and promotion of research.
Cavernoma Alliance UK provides information about cavernoma, regular events for people affected by cavernoma, and news about the latest research.
- Visit: www.cavernoma.org.uk
- Read a case study: how Cavernoma Alliance UK have benefited from their partnership with the Foundation
Connect
Connect is a charity for people living with aphasia, a communication disability which usually occurs after stroke. It can also be caused by brain injury or tumour. The charity's mission is to improve the lives of people living with aphasia and communication disability, equipping them to re-connect with life. Connect:
- support people with aphasia to develop and deliver services that they need and want such as conversation groups, befriending, conversation partner schemes and counselling.
- provide training and consultancy to service providers
- provide information and support
- champion the rights of people with aphasia
- Visit: www.ukconnect.org
Different Strokes
Different Strokes is a national charity launched in 1996 by younger stroke survivors for younger stroke survivors, for the purposes of active self-help and mutual support.
Different Strokes provides throughout the UK:- Practical information packs to survivors
- The StrokeLine, a helpline staffed by younger stroke survivor volunteers
- Specialised exercise classes
- Benefits and rights information
- Advice and information on education, special training and work opportunities
- A regular newsletter to provide information of the latest treatments and aids
- An interactive website to keep members in touch with each other
- Access to counselling services
- Representation of younger stroke survivors' concerns and views
Health Information Centre, University Hospital Coventry and Warwickshire
The Health Information Centre is located on the ground floor, in the main entrance to the University Hospital in Coventry and is equipped with patient information about conditions, treatments and illnesses. There is also free internet access and staff on hand to help with any information requests that patients may have.The Centre is open from 9am to 5pm, Monday to Friday and ensures that all patients, staff and visitors, have access to high quality health information on conditions, procedures and treatments.
The address is:
Health Information Centre
UHCW NHS Trust
University Hospital
Clifford Bridge Road
Coventry CV2 2DX
Enquiries can also be made in person, by telephone or by email:
Telephone 024 7696 6051
email: health.information@uhcw.nhs.uk
I Have IIH
I Have IIH is a website where people can share diverse experiences on coping with idiopathic intracranial hypertension (IIH). It is the Official IIH Support Group for the world-wide organisation IH Brainpain.The website, run by people with experience of IIH, offers constructive advice based on experience and success. Although it does offer information on the various topics related to IIH, the site primarily aims to help people with IIH to achieve a more positive and productive life with this condition.
- Visit: www.ihaveiih.com
Knowledge Centre, Walkergate Park for Neurorehabilitation & Neuropsychiatry
Walkergate Park for Neurorehabilitation & Neuropsychiatry is based in Newcastle upon Tyne, and provides services for people with neuro disabilities caused by disease, illness or accident. These can include major physical disabilities that affect mobility, self-care, and everyday activities or disturbances of cognition or behaviour. The centre brings together existing rehabilitation, behavioural and psychiatry services in the region into a fully integrated service. This centre will pave the way for facilities, which will lead to better research and development of best practice, both nationally and internationally.The Knowledge Centre has been designed to allow patients and their relatives (or carers) to access high quality, up to date, relevant information on a range of related topics.
There is a collection of leaflets and booklets available in the centre. Most leaflets are free. If you need any information on subjects connected to neurorehabilitation, you can also contact the Knowledge centre in person, by email, telephone, or in writing. This service is confidential and free.
The Knowledge Centre is situated next to the main entrance of Walkergate Park and is open 10am – 4pm Monday - Friday.
For more details contact:
Knowledge Centre
Northumberland Tyne & Wear NHS Foundation Trust
Benfield Road
Newcastle upon Tyne
NE6 4QD
Tel: 0191 2875030
Email: library.enquiries@ntw.nhs.uk
- Or visit: www.ntw.nhs.uk/pic
Neuro Partners
Neuro Partners are specialists in delivering tailored support packages to individuals, in particular those with neurological conditions. They use a person-centred approach and all of their packages are designed to meet the requirements of the individual service user whether at home, in the community, educational setting or workplace.
Their Person Centred Approach is more than just service user involvement, it’s individual to and owned by the person being supported.
The services provided to individuals and their families can range from as little as 2 hours per week community integration, to 24 hour complex needs support, and may include:
- Tailored packages of care & support, including transitional planning
- Domiciliary care (registered with the Care Quality Commission)
- Complex Needs Services
- Community support, rehabilitation & integration
- Brain injury rehabilitation
- Visit: www.neuropartners.co.uk
Neurosupport
Neurosupport provides advice, information and support to people with a neurological condition, their families, carers, health and social care professionals. It is also concerned to raise the awareness of neurological conditions in the community at large. There is a comprehensive library with information on a large number of neurological conditions and related disability issues; an enquiry service, bi-monthly newsletter and website. The Working Life Service, part of Neurosupport, offers support and advice to people with neurological disorders on issues surrounding employment, work retention, retraining and alternatives to work. The Neurolife project offers advice and courses for people looking to improve their quality of life.
The Nottingham Traumatic Brain Injury Service
A non medically led, client centred, specialist case management and rehab team for people who have suffered a moderate or severe traumatic brain injury and are aged 16 years and over and registered with a Nottingham GP.
Consists of:
- Management support
- Clinical Specialist Traumatic Brain Injury Case Managers (professional backgrounds in Occupational Therapy, Nursing and Social Work) (2WTE)
- Outreach Occupational Therapist specialising in vocational rehab (0.6WTE)
- Cognitive Behavioural Psychotherapist (0.8WTE)
- Clinical Psychologist (0.6WTE)
- Assistant Practitioner (temporary) (0.5WTE)
- Admin Support (1WTE)
Contact:
The Nottingham Traumatic Brain Injury Service
Nottingham University Hospitals NHS Trust
City Hospital Campus
Mobility Centre
Hucknall Road
Nottingham
NG5 1PJ
Tel: 0115 9691169 ext 55150
Fax: 0115 9934904
Email: denise.shipman@nuh.nhs.uk
- Visit: www.nuh.nhs.uk/ntbis
OUCH (UK) - The Organisation for the Understanding of Cluster Headache
OUCH (UK) exists to raise general awareness of cluster headache within the medical profession and the general public.
OUCH (UK) offers support and guidance to sufferers and their families and works closely with the Institute of Neurology in London where Dr Manjit Matharu runs the Headache Group.
The Group conducts clinical and laboratory-based research into the mechanisms and management of headache syndromes. Their main interests are trigeminal autonomic cephalalgias - in particular cluster headache - and migraine. The Group is widely acknowledged to be amongst the foremost clinical/translational groups in headache in the world. Many members, both sufferers and supporters, have participated in the research carried out there.
OUCH (UK) produces regular newsletters/information leaflets and to date has held several regional meetings around the country and holds a National Conference every two years.
- Visit: www.ouchuk.org
Royal Hospital for Neuro-disability
The Royal Hospital for Neuro-disability (RHN) is a national medical charity providing assessment, rehabilitation treatment, and care for adults with profound and complex disabilities caused by disease or damage to the brain or other parts of the nervous system.
The Hospital, based in Putney, South West London, offers a range of rehabilitation, respite, transition to community and community support services, as well as longer-term care including ventilator services and the UK’s largest specialist service for advanced Huntington’s disease.
People at the Hospital may have a brain injury caused by an accident, infection, lack of oxygen to the brain, or a clot or bleed into the brain causing a stroke. Others may have any of a range of degenerative neurological illnesses, such as multiple sclerosis or Huntington’s disease.
The academic arm of the Hospital, the Institute of Neuropalliative Rehabilitation, carries out vital research into all aspects of clinical management of people with rare, complex, and chronic neurological conditions. The Institute provides families, professionals, and policymakers with a broad range of information, collaborating with organisations around the world to bring best practice, high standards, and innovative treatment to people with profound disability.
Shine
Shine (formerly ASBAH) is a registered charity, which was formed in 1966, initially to help families and individuals affected by spina bifida and hydrocephalus.
Today Shine is a community of individuals,families, friends and professionals, sharing achievements, challenges and information on living with hydrocephalus, or spina bifida, and related issues.
The Shine website and Facebook page provide opportunities to communicate on any topic of interest.
Together Shine also campaign for equality both directly with local and national government but also through informing our members of surveys and consultations and events they can take part in to ensure their voices are heard.
Of course, Shine also continues to provide a wide range of services – from direct support and information, to campaigning and research.
Working throughout England, Wales and Northern Ireland Shine aims to provide help on any matter related to the conditions it covers*, including:
- An opportunities programme of events
- A network of community and health and education advisers
- A helpline - 0845 450 7755
- A range of publications
- A comprehensive website - with different sections for adults, young people and professionals.
Shine also support research and campaigns aimed at helping to improve the lives of individuals and families living with spina bifida or hydrocephalus.
*As well as spina bifida and hydrocephalus, Shine provides information and advice and support on:
- Normal Pressure Hydrocephalus (NPH)
- Intracranial Hypertension (IH – sometimes referred to as BIH)
- Anencephaly
- Other NTDs (neural tube defects)
Speakability
Speakability is the national charity that supports and empowers people with Aphasia to overcome the barriers they face by:- supporting people with Aphasia and their carers through its Information Service, national network of Self-Help Groups and programme of activities
- influencing individuals, organisations and statutory bodies in order to improve services for people living with Aphasia
- raising funds to support these aims
Speakability puts people with Aphasia at the very centre of the organisation, and they are involved as volunteers, Trustees and members of staff. Groups are run according to the Self-Help model to ensure that people with Aphasia have a say in how their Group is run and the activities that the Group arranges.
People with Aphasia, their carers and health professionals are also consulted and fully involved in the writing and design of Speakability's publications, communication tools and website.
- Visit: www.speakability.org.uk
The Spinal Cord Tumour Forum
The Spinal Cord Tumour Forum is a website for people in the UK who have had, or whose lives have been affected by, benign spinal cord tumours. It was created and is run by spinal cord tumour sufferers, and for many users of the website this will be their first contact with another sufferer.
As well as a forum, the website contains information on spinal cord
tumours, personal stories and news updates.
- Visit: www.spinalcordtumour.org.uk
- Read a case study: how the Spinal Cord Tumour Forum has benefited from its partnership with the Foundation
Spinal Injuries Association
The Spinal Injuries Association (SIA) is the leading national charity for spinal cord injured people. The SIA is unique in that it is a user led organisation; its elected Trustees are all spinal cord injured and are voted for by the spinal cord injured membership.
The SIA aims to:
- Offer support and assistance from the time of injury and for the rest of a paralysed person's life
- Provide services to increase an individual's quality of life
- Support the families of newly injured people
- Increase knowledge and awareness of the causes and consequences of spinal cord injury
- Campaign for the best medical and social care for spinal cord injured people
- Visit: www.spinal.co.uk
Surrey Dizziness Service: Royal Surrey County Hospital NHS Trust
The Surrey Dizziness Service is based at the Royal Surrey County Hospital in Guildford. The department offers diagnostic and management services for dizzy patients throughout Surrey and neighbouring areas.
The service is provided by the Audiology Department but there are links established with the Falls Clinic, Otorhinolaryngology, Physiotherapy, and Psychology.
The service offered helps patients with various inner ear disorders including Benign Paroxysmal Positional Vertigo, Meniere’s disease, and Labyrinthitis.
The latest technology is available for testing and patient diagnosis. The clinicians believe that each patient is an individual and thus treatment programs are developed by mutual agreement.
Development and training are also highly important factors, so seminars are offered annually in the Education centre.
Contact information:
Nicola Topass
Team Leader (Balance Service)
Audiology Department
Royal Surrey County Hospital
Egerton Road
Guildford
Surrey
GU2 7XX
The Health Shop, Ninewells Hospital & Medical School, Dundee
The Health Shop provides free health promotion information, plus advice and support to hospital staff, patients, visitors, and students. There is an extensive range of health promotion literature, plus access to databases of local and national self-help and support groups. A member of staff is available to answer queries too.
The Health Shop is open Monday to Friday from 10am - 4pm.
For more information, please contact:
Helen J Brady
Health Shops Manager and Heartstart Discovery Co-ordinator
The Health Shop
Level 7
Ninewells Hospital and Medical School
DUNDEE
DD1 9SY
or
Jodi Moodie
Health Shop Adviser
Address as above
Tel: (01382) 633859/740400
Email: helenjbrady@nhs.net; jodi.moodie@nhs.net
- Or visit: www.taysidepublichealth.com
Transverse Myelitis Society
The Transverse Myelitis Society is a UK registered charity, run by volunteers, with over 750 members. Membership is free, and new members receive a pack containing information about transverse myelitis.
On the Society's website, members can:
- Download leaflets and booklets on transverse myelitis
- Find out if there is a UK Support Group near you
- Use the Support Forum to communicate with other members and learn more about everyone’s experience of transverse myelitis.
The UK Transverse Myelitis Society is affiliated with the worldwide organisation The Transverse Myelitis Association.
- Visit: www.myelitis.org.uk
