Our current partnerships are:
- The Association of Chartered Physiotherapists in Respiratory Care (ACPRC)
- The Association of Respiratory Technology (ARTP)
- The Association of Palliative Social Workers (APCSW)
- AtaLoss.org
- BAPEN
- The British Dietetic Association
- Carers UK
- College of Paramedics
- Huntingdon's Disease Association
- Institute of Chiropodists and Podiatrists
- Multiple Sclerosis Trust
- NICE endorsement
- The Primary Care Neurology Society
- Royal College of General Practitioners
- The Royal College of Nursing
- Royal College of Speech and Language Therapists
- University of Northampton
The Association of Chartered Physiotherapists in Respiratory Care (ACPRC)
The Association of Chartered Physiotherapists in Respiratory Care (ACPRC) promotes health and best practice in respiratory physiotherapy.
The ACPRC have supported the Association at a number of high-profile events and regularly work with us develop resources and information for their members.
We are delighted they have endorsed our online course on the effective operation of multidisciplinary teams (MDT). The ACPRC have also endorsed Transforming MND Care – our audit tool for the NICE Guideline on MND,
Jennifer Bedford holds this relationship.
Website: www.acrpc.org.uk
Facebook: The ACPRC
Twitter: @TheACPRC
The Association for Respiratory Technology (ARTP)
The Association for Respiratory Technology (ARTP) provides training and quality assurance to physiological measurement issues in respiratory medicine in the UK. They deliver the only national, professionally recognised, qualifications in pulmonary Function Testing and Spirometry in the UK.
The ARTP is a strong supporter of the Association, consistently providing invaluable feedback on various projects and attending many meetings and high-profile events.
ARTP has endorsed Transforming MND Care – our audit tool for the NICE Guideline and worked with us to promote the guideline.
Jennifer Bedford holds this relationship.
Website: www.artp.org.uk
Facebook: ARTP News
Twitter: @ARTP_News
The Association of Palliative Care Social Workers (APCSW)
The Association of Palliative Care Social Workers (APCSW) aims to raise the profile of palliative care social work, and support and advise palliative care social workers. They support and share best practice and promote research and evaluation to continually improve end-of-life and bereavement care
The APCSW works closely with us, advising and supporting with the development of resources. They have endorsed our online course on the effective operation of multidisciplinary teams (MDT) along with other professional organisations.
Jennifer Bedford holds this relationship.
Website: www.apcsw.org.uk
Twitter: @APCSW1
Ataloss.org
AtaLoss.org provides a UK wide one-stop-shop website to signpost bereaved people to support.
Their vision is that nobody in the UK, suffering a significant loss, is unable to find the support that they need. The website has an online chat facility for the newly bereaved and also holds a searchable database of bereavement support organisations.
AtaLoss.org aims to find the right support for people of all ages, and types of bereavement. We hope to work with them to increase the number of services listed so our members can more easily find the support they need when they need it.
Jennifer Bedford holds this relationship.
Website: www.ataloss.org
Facebook: AtaLossCharity
Twitter: AtaLossCharity
BAPEN
BAPEN is Charitable Association which brings together core groups including dietitians, doctors, nurses, patients and pharmacists to raise awareness and understanding of malnutrition in all settings. It provides education, advice and resources to improve the nutritional care of patients and those at risk from malnutrition in the wider community.
BAPEN have endorsed Transforming MND Care – our audit tool for the NICE Guideline. We will be working together to better understand and improve the patient experience of nutritional interventions as well as attending conferences to raise awareness of MND and the Association.
Jennifer Bedford holds this relationship.
Website: www.bapen.org.uk
Twitter: @BAPENUK
The British Dietetic Association (BDA)
The British Dietetic Association (BDA) is the only body in the UK representing the whole of the dietetic workforce. It is both a trade union and professional body.
The Association has a long standing and excellent partnership with the BDA which is laid out in a memorandum of understanding. We work closely with the Neurosciences Specialist Group and support their AGM and annual study days.
The BDA has endorsed a number of our resources, including our Eating and Drinking guide and has supported us with several high profile events.
Jennifer Bedford holds this relationship.
Website: www.bda.uk.com
Facebook: British Dietetic Association
Twitter: @BrDieteticAssoc
Carers UK
As the UK's only national membership charity for carers, Carers UK is both a supportive community and a movement for change. They bring together the voices of carers to campaign for lasting change and provide expert information, advice and support for people with a caring role. They also innovate to find new ways to reach and support carers and support a growing network of carer positive employers.
We are partners together in Carers Week, an annual event which seeks to raise awareness of the importance of caring and to celebrate carers.
Jennifer Bedford holds this relationship.
Website: www.carersuk.org
Facebook: CarersUK
Twitter: @CarersUK
College of Paramedics
We have an excellent partnership with the College of Paramedics.
The college has recorded a podcast about MND and together we have developed a flowchart to support paramedics when attending a call out to a person living with MND.
The Association will be attending conferences to further raise awareness amongst this key group of professionals.
Jennifer Bedford holds this relationship.
Website: www.collegeofparamedics.co.uk
Facebook: College of Paramedics
Twitter: @ParamedicsUK
Huntington's Disease Association
The Huntington's Disease Association is the national charity supporting people affected by Huntington’s disease across England and Wales. Huntington’s is a life limiting disease with no cure. Around 8000 people in the UK have Huntington's and around 32,000 are at risk of developing it. The Huntington's Disease Association provides a national support network for families and professionals. Their mission is to enable everyone affected by Huntington's disease to live their life to their full potential by:
- improving care and support
- educating families and the professionals who work with them
- championing the needs of the Huntington's community and influencing decision makers.
Jennifer Bedford holds this relationship.
Website: www.hda.org.uk
Facebook: @hdauk
Twitter: @HDA_Tweeting
The Institute of Chiropodists and Podiatrists
The Institute of Chiropodists and Podiatrists (IOCP) is a professional body, serving and supporting practitioners throughout entire profession of podiatry and podiatric medicine. Their strict code of ethics ensures the best quality of care to the public. They aim to:
- standardise training
- ensure the highest ethical responsibilities of practitioners
- raise the profile of podiatry and foot health
- guide the future development of the profession.
Jennifer Bedford holds this relationship.
Website: https://iocp.org.uk
Facebook: IOCPChiropody
Twitter: @iocp_chiropody
Multiple Sclerosis Trust
The MS Trust is committed to ensuring everyone with MS can access the treatments and services they need and deserve. They aim to represent and reach all people affected by MS including Black, Asian and minority ethnic people, LGBTQ+ people, and people living with disabilities. They want to ensure that all voices and viewpoints are heard and amplify the voices of people who have been marginalised.
Jennifer Bedford holds this relationship.
Website: https://mstrust.org.uk
Facebook: mstrustuk
Twitter: @MSTrust
NICE endorsement
We worked with Birmingham City University to develop practitioner audit skills. As a result:
- Sarah Cadell has had her shared learning example Audit of Motor Neurone Disease (MND) multidisciplinary team clinic services against NICE guidelines in a University Health Board quality assured and published in NICE’s shared learning collection.
- Dorinda Moffatt has had her shared learning example Audit proposal to address cough augmentation for people with Motor Neurone Disease (MND) - a shared resource tool quality assured and published in NICE’s shared learning collection.
Primary Care and Community Neurology Society (P-CNS)
The Primary Care Neurology Society is the only UK society established for primary care professionals with an interest in neurology. It is a committed and valued supporter of the Association – providing key support to many projects and events.
There are solid links established from the P-CNS website to the Association GPs page. Their publication Neurodigest has carried articles about MND to its database of 3000 members. We will continue to work together to raise awareness of MND including at P-CNS events such as Red Flags workshops and Neurology Study Days.
Jennifer Bedford holds this relationship.
Website: www.p-cns.org.uk
Facebook: Primary Care Neurology Society (P-CNS)
Twitter: @communityneuro
Royal College of General Practitioners
Our link with the RCGP has resulted in some important pieces of work for the Association including the Red Flags early diagnosis tool which has been picked up and is now being used in other countries including Australia, New Zealand, and Switzerland.
We have 2 accredited online modules which sit in the college’s online continuing professional development platform. The modules have been incredibly well used and they continue to receive positive feedback. The courses can be found on the Professional education and development page.
Jennifer Bedford holds this relationship.
Website: www.rcgp.org.uk
Facebook: RCGP.org
Twitter: @rcgp
Royal College of Nursing
The Royal College of Nursing is the world’s largest nursing union and professional body.
We work very effectively with colleagues in the RCN and its neurosciences committee and have been privileged to attend Congress to share information about MND.
Together we have delivered conferences and lectures as well as an online CPD resource for nurses and health care assistants.
In 2017 we launched the Hawking Annual MND lecture which established MND firmly in the events calendar of this prestigious organisation.
Jennifer Bedford holds this relationship.
Website: www.rcn.org.uk
Facebook: Royal College of Nursing
Twitter: @thercn
The Royal College of Speech and Language Therapists
The RCSLT is the professional body for speech and language therapists in the UK. It provides leadership to the profession, clinical guidance to support best practice in speech and language therapy and professional guidance to support members to meet the requirements of their regulator, the Health and Care Professions Council.
RCSLT promotes research into the field of speech and language therapy, supports better education and training of speech and language therapists and provides information for its members and the public about speech and language therapy.
In 2018 the Association worked with RCSLT to produce a resource about MND for their membership and delivered a very successful webinar in June 2018 which has had over 1000 views to date.
Jennifer Bedford holds this relationship.
Website: www.rcslt.org
Facebook: RCSLT Official
Twitter: RCSLT
University of Northampton
We have a long standing and valuable partnership with the University of Northampton. We are two organisations based in Northampton with a common interest in public service and improving communities.
Our collaboration has resulted in volunteering opportunities at the Association for University students and the development of our very successful online care worker module.
The online course exploring and explaining the effective working of a multidisciplinary team launched in 2018.
Website: www.northampton.ac.uk
Facebook: University of Northampton
Twitter: @UniNorthants