The following links provide guidance on the standards, pathways, service specifications and referral criteria that should be adhered to by AAC service providers.

The relevant reports outline the standards that providers are expected to deliver currently, and those which they should aim to deliver in the future. A set of minimum standards are also provided, against which the services being purchased by those commissioning AAC services can be measured. The documents also provide clinicians with advice on what AAC users, their families and support workers should be able to expect from current services.

Decision chart: Guidance on referral criteria for specialised AAC services and New service specification for AAC can be found at www.england.nhs.uk 

Guidance for commissioning AAC services and equipment can be found at www.england.nhs.uk (PDF)

Motor Neurone Disease Association (MNDA) guidelines and pathways can be found at www.mndassociation.org/forprofessionals/aac-for-mnd/

For further information visit:

• www.communicationmatters.org.uk

Quality Trauma Discharge (QTD)

Initiated by the Major Trauma Centre at Southmead Hospital, QTD allows for the mitigation and avoidance of patient / carer concerns following discharge. Comprising of a comprehensive discharge consultation with a trained Major Trauma Practitioner, provision of a personalised discharge pack and post discharge follow up, these interventions have been shown to educate and empower patients / carers to better manage the sometimes difficult move back to a local hospital or home.

Major Trauma / Intensive Care Bereavement Charity Services

A stand-alone service developed by the team at the Adult Major Trauma Centre: a member of the Major Trauma Team will call to follow up with the patient's relatives/carers following bereavement, allowing some time for you to begin to come to terms with your loss. Unintrusive in nature, this is a good opportunity to talk to those involved in your loved one's care and for them to talk through anything with you or answer any questions you may have. This service is tailored to the needs of the families of our patients and being mindful of how trauma can have different effects on different people, we can offer ongoing support and telephone contact; we want you to fully understand your loved one's care while they stayed with us.

Get involved with the Adult Major Trauma Centre

Patient representatives attend the twice yearly Major Trauma Centre board meeting and provide a valuable insight to their care from a patient/relative perspective. We find this feedback very beneficial in developing our services and delivering training to our clinical staff. Should you be interested in getting involved, or want to find out more, please contact us.

Citizen’s Advice Bureaux (CAB)
www.citizensadvice.org.uk

Organ Donation
www.organdonation.nhs.uk

Blood Donation
www.blood.co.uk

Aftertrauma
A charity which aims to provide a community for patients and families to rebuild lives and support each other after experiencing a traumatic injury. www.aftertrauma.org

Major Trauma Network Services  

The regional Major Trauma Network ensures that patients who suffer a serious injury within the Severn area are transported safely and quickly to an appropriate service, returned closer to home as soon as is possible (whilst maintaining specialist input into their care) and receive care of the highest quality irrespective of where they live and whenever they suffer a serious injury. 

Who can apply to be a volunteer?

Are there any minimum requirements in terms of commitment?

What will I be doing as a hospital volunteer?

What is the recruitment process?

Do I need any previous experience?

Do you provide training?

Why do people want to volunteer in a hospital?

I want to volunteer at the weekends, is this possible?

I want to go into Medicine/Nursing, can I shadow the doctors or nurses?

I would like to bring my car to the hospital, what is the situation with parking?

What other benefits do you offer?

Sarcoma UK

Sarcoma UK is the only cancer charity in the UK focusing on all types of sarcoma. For more information visit sarcoma.org.uk

British Sarcoma Group

The British Sarcoma Group (BSG) is the association of the specialist clinicians, nurses and supporting professionals who treat patients with sarcoma in England, Wales, Scotland and Northern Ireland. For more information visit www.britishsarcomagroup.org.uk

Soft tissue sarcomas, Cancer Research UK

All about soft tissue sarcomas – cancers of the supporting tissues of the body, including the muscles, nerves, fat, blood vessels and fibrous tissues. Information on symptoms and causes, tests and scans to diagnose sarcoma, and treatments (including surgery, chemotherapy and radiotherapy) and current research. For more information visit www.cancerresearchuk.org/about-cancer/type/sarcoma

Soft tissue sarcomas, Macmillan Cancer Support

Information on soft tissue sarcomas, including how they are diagnosed, treatments you might have, possible side effects and how to get further support.

For more information visit www.macmillan.org.uk/Cancerinformation/Cancertypes/Softtissuesarcomas/Softtissuesarcomas

Soft tissue sarcomas, NHS Choices

Soft tissue sarcomas are a group of rare cancers affecting the tissues that connect, support and surround other body structures and organs. For more informaiton visit www.nhs.uk/conditions/Soft-tissue-sarcoma/Pages/Introduction

This list of books, web pages and other resources have been suggested by our patients and clinicians.
There are many books available, and we have selected a few that we think are well-written and helpful. However, we also know that some people prefer different styles of writing and different approaches. We have written a summary of each book to give you an idea of the content. You should be able to request these books from your local library.

Books

Living with ME and Chronic Fatigue Syndrome (2022)

• Authors: Dr Gerald Coakley and Beverly Knops
• Publisher: Penguin
• ISBN: 9780241557211
• An evidence-based guide for people struggling with ME/CFS - as well as their friends and family - that provides practical information and accessible advice on how to manage and live with this challenging condition, at all stages of severity.

Fighting Fatigue: Managing the Symptoms of CFS/ME (2009)

• Authors: Sue Pemberton and Catherine Berry
• Publisher: Hammersmith Press Limited
• ISBN: 9781905140282
• This book offers straightforward and specific expert advice, accompanied by real life stories, on managing different aspects of everyday life that can affect ME/CFS. Written by a healthcare professional and a person with M.E./CFS, they understand the way fatigue affects concentration and therefore break their guidance into easy-to-follow steps that can be worked through at the reader's own pace.

Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME (2009)

• Authors: Bruce Fernie and Gabrielle Murphy
• Publisher: Karnac Books
• ISBN: 9781855755376
• This book is written to help patients to develop and apply new insights into overcoming some of their specific symptoms as well as coping with ME/CFS, both during the course of their therapy and afterwards. It provides a structure and framework for understanding ME/CFS and its effects as well as practical approached to help address some of the symptoms.

Websites

Action for ME 

www.actionforme.org.uk

Action for ME’s website provides lots of information about ME/CFS including advice about benefits, welfare and employment rights, local resources, and information booklets you can download. We have worked closely with Action for ME to develop a self-management guide called Pacing for People with M.E. which can be downloaded free from this webpage: https://www.actionforme.org.uk/resources/our-publications/booklets/

The M.E. Association

https://meassociation.org.uk/about-the-mea/

The M.E. Association is a medical charity providing information about ME/CFS and funding research. They offer a wide range of information leaflets.

The British Association for Clinicians in ME/CFS (BACME)

www.bacme.info 

BACME is a multidisciplinary organisation which promotes and support the delivery of evidenced based treatment for children, young people and adults with ME/CFS throughout the UK. BACME have written a Therapy Guide and a Symptom Management Guide, based on clinician expertise, patient experience and the best available evidence, and both are free to download from their website.

Access to Work

https://www.gov.uk/access-to-work

An Access to Work grant can pay for practical support if you have a disability, health or mental health condition to help you:

• start working
• stay in work
• move into self-employment or start a business

North Bristol NHS Trust Pain Service website

The Pain Service website has a page on useful books, and another page on web links, which may be useful for people with ME/CFS that is causing significant pain.

https://www.nbt.nhs.uk/our-services/a-z-services/pain-clinic-services/pain-clinic-useful-resources

https://www.nbt.nhs.uk/our-services/a-z-services/pain-clinic-services/pain-clinic-useful-links

NHS Information

National Institute for Health and Clinical Excellence (NICE) Guideline for ME/CFS 

https://www.nice.org.uk/guidance/ng206

This guideline is about the care of people with ME/CFS in the NHS in England and Wales. The booklet explains guidance (advice) from NICE (the National Institute for Health and Clinical Excellence). It is written for people with ME/CFS, and parents or carers of people with the condition. It may also be useful for other family members or for anyone with an interest in ME/CFS.

NHS Website

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

An overview of ME/CFS and its management.

*Links checked 30/04/2023

Bristol M.E. Service has been involved in an innovative pilot project to support people with M.E./CFS with employment issues. 

The pilot project, called Support, Empower, Employ M.E. (SEE M.E.), was delivered by the charity Action for M.E. in partnership with the Bristol M.E. Service here at North Bristol NHS Trust. The project, launched on 4 June 2015, ended in October 2016, and was open to people living with M.E./CFS within Bristol, Gloucestershire and North Somerset. SEE M.E. was funded by the National Lottery through the Big Lottery Fund, the Henry Smith Charity, Lloyds Bank Foundation, Rayne Foundation, Denman Charitable Trust and Dame Violet Wills Trust.

SEE M.E. provided support to people who were currently employed but struggling to sustain work or may be at risk of losing their job, as well as those considering work in the future or applying for jobs. SEE M.E. provided two specialist Employment Advisors working alongside the NHS clinical service to enable integration with healthcare provision, whilst building partnerships with a range of mainstream employment support, employers and Trade Unions.

The need for the project was raised by Action for M.E. members and our patients, who expressed a clear view that existing employment support operated at too great a distance from their healthcare provision to enable a well-coordinated approach.

The aim was to support more than 150 people living with M.E. to progress towards and achieve their employment goals, whilst gathering specific evidence of ‘what works’. Action for M.E. will publish a project report, including recommendations for policy, practice and future service commissioning.
The project produced clear guidance for employers, health professionals and people living with M.E./CFS:

• www.actionforme.org.uk/resources/our-publications/booklets/see-me-toolkit-for-professionals
• www.actionforme.org.uk/uploads/pdfs/me-and-work-2016.pdf
• www.actionforme.org.uk/uploads/pdfs/employers-guide-to-me-booklet-2016.pdf

Occupational Therapist, Fiona McKechnie, said “We were thrilled to find out that we had been shortlisted in the Best Quality Research or Innovation category of the Exceptional Healthcare Awards. The team here has worked very hard over the years to provide high quality support to people with Chronic Fatigue Syndrome (M.E.) and this was a great acknowledgment of that. The pilot employment project we have been working on with Action for M.E. (SEE M.E.) was the result of close collaboration with our clinic, service users,  the charity and external funders. The results have been excellent with 73% of people taking part achieving their employment related goals. By doing this work within the clinic we have maximised the effectiveness of the treatment we can offer.”

Pictures of the Bristol Centre for Enablement. 

Pictures of the outside of Bristol Centre for Enablement.

Electrically powered wheelchairs are available for clients meeting the criteria, there are two options available

Indoor only powered wheelchairs

This type of chair is for use around your home environment, including garden, if it is accessible. They may also be used around School and Day Centres if there is an element of supervision.

An indoor powered wheelchair may be used part-time or full-time to support mobility however, usage must be regular and with a long-term need.

Your home environment must be suitable for powered wheelchair use before one can be provided.
 

Indoor/outdoor powered wheelchairs

This type of chair is suitable for using inside your property as well in general public.

To be eligible for an assessment for an indoor/outdoor powered wheelchair you must be using indoor powered equipment on a full-time, regular basis for all your mobility.

To use this chair, your property must be fully accessible inside/outside.

Medical clearance from your GP and completion of a successful outdoor driving assessment is required before outdoor driving is permitted. 

A time period is required to allow familiarisation with an indoor powered wheelchair before an indoor/outdoor assessment can be undertaken. This is likely to be within 3-6 months after the chair is provided.

Important notes regarding electrically powered wheelchairs:

Outdoor-only powered wheelchairs or mobility scooters are not provided.

You have to meet the criteria for wheelchair provision to be considered for a powered wheelchair.

Wheelchair provision is based primarily on your clinical needs. Equipment choice may mean that changes have to be made to your home environment or transport choices.

Property adaptations and access to an accessible vehicle are your responsibility.