Welcome to our January edition of Headlines
your ACPIN newsletter
In this issue
News from ACPIN Public Affairs
Local Exercise Groups for Stroke
All-Party Parliamentary Group launch report Time for Change: Acquired Brain Injury and Neurorehabilitation on ABI
Upper Limb Stroke Rehabilitation Summer School report
2018 ACPIN AHP Stroke Abstract prize
News from ACPIN Public Affairs
ACPIN is registered as a stakeholder on a number of NICE Guidelines. When a NICE guideline or quality statement is being updated we have the opportunity to influence this. Usually the notice and consultation period can be quite short.
One of the aims of ACPIN Public Affairs is to respond to Guidelines, while another is to give members a voice. This is an opportunity for you to contribute your voice, to an ACPIN and a CSP response on behalf of your patients and our profession, for the public good.
I outline below the current updates, consultation periods, hyperlinks to the relevant areas of the NICE website. Most importantly I would need these submissions prior to the NICE deadlines, as indicated below.
Read carefully, think hard and contribute powerfully!
NICE draft guideline on stroke and transient ischaemic attack in over 16s – diagnosis and initial management (update)
This draft guideline and its supporting evidence are now out for consultation. Link to scope here.
The area of most interest to physiotherapists may be the section on ‘Early mobilisation and optimum positioning of people with acute stroke’
The consultation page has all the information and documents you need to comment.
Expected guideline publication: 1 May 2019.
The consultation closes at 5.00pm on 11 January 2019.
Please email contributions to ACPIN by 5pm 4 January 2019.
NICE physical activity: encouraging activity within the general population quality standard
Quality standard consultation schedule: 4 January 2019 to 1 February 2019 – link here
Please email contributions to ACPIN by 5.00pm 18 January 2019.
NICE dementia (update) quality standard
Quality standard consultation, provisional schedule: 29 January 2019 – 26 February 2019 – link here
Please email contributions to ACPIN by 5.00pm 12 February 2019.
CG186 Multiple sclerosis in adults: management
NICE propose to update this guideline and will focus on multiple sclerosis (MS) symptom management and rehabilitation. New evidence has been identified in a number of topics of interest to physiotherapists – link here
These are being checked by NICE to see whether they need updating
CG148 Urinary incontinence in neurological disease: assessment and management
CG75 Metastatic spinal cord compression in adults: risk assessment, diagnosis and management
CG162 Stroke rehabilitation in adults
Local Exercise Groups for Stroke
LEGS (Local Exercise Groups for Stroke), a physiotherapy-led rehabilitation charity for people who have had a stroke, has just won two awards at the RBKC (Royal Borough of Kensington and Chelsea) Business Awards 2018. LEGS was successful in winning ‘Young Entrepreneur of the Year’ for lead physiotherapist and founder Annys Fairweather and taking home the commended trophy in ‘Best Charity or Social Enterprise’.
Setting up LEGS has taken a huge amount of effort and commitment and there have been several times along the way when I have wondered whether to keep going. However our key ethos, of ongoing, high quality evidence-based rehabilitation being available to everyone, regardless of income, stage in stroke recovery or address and my dedication to use my skills meaningfully, have kept me going through the many challenges.
I believe that recovery is forever. And the need for longer term rehabilitation and social opportunities for those who have had a stroke has been obvious to me for some time. After NHS rehabilitation finishes, many people are left with little or no support to continue their recovery and many face social isolation as a result of their stroke.
I set up LEGS in September 2016 as a volunteer led pilot and gained registered charity status in March 2018. We provide physiotherapy led group exercise and support sessions, running concurrently with or after NHS rehabilitation, as both a stepping stone onto other activities and also for long term attendance. Our aims are to increase physical activity participation and function, improve health and mental well-being and to help improve confidence and social participation after a stroke.
LEGS currently has two sessions a week running at a private exercise studio in Notting Hill, west London. The sessions consists of a 60 minute strength, balance and aerobic circuit exercise programme. Every week there is a discussion session with topics including stroke prevention and healthy living, presentations of current stroke research from external speakers and peer support exchanges and debate.
Our visions for 2019/2020 are to expand to include sessions for people with other neurological conditions such as Parkinson’s and MS and our five to ten year plan is to expand across more sites in London and eventually further afield.
All participants have an initial physiotherapy assessment and then after every twelve sessions we review everyone’s goals and progress exercises on an individual basis, to complete within the group circuit. Participants pay £5 per session and the feedback we have from participants is that contributing to their rehabilitation is empowering and helps with their commitment. Fundraising is essential as our costs per person are much higher than this, but we are committed to our sessions being affordable. I have had to rapidly develop fundraising and charity regulation skills and knowledge, which are new areas for me as a previous NHS clinician.
It’s been an amazing year, especially considering that I have also had a baby and major hip surgery to contend with. Since January, we have opened a second session, gained charity status, gained Lottery funding, employed physiotherapists to run the sessions and taken on a part time administrator. I am thrilled that the huge effort it has taken to get LEGS off the ground has been recognised by the RBKC awards. LEGS has proven to be really popular and highlights the huge need in the community for our services.
Time for change
All-Party Parliamentary Group on Acquired Brain Injury launches report on acquired brain injury and neurorehabilitation
“Acquired Brain Injury is an invisible epidemic, and we need to ensure that the neurorehabilitation services required following a brain injury are ‘fit for purpose’ throughout the UK” said Chris Bryant MP and Chair of the All-Party Parliamentary Group on Acquired Brain Injury (APPG on ABI) speaking today in London at the launch of a report Time for Change: Acquired Brain Injury and Neurorehabilitation.
There are more than 1.3 million people living with the effects of brain injury at a cost to the UK economy of £15 billion per annum or 10% of the National Health Service (NHS) budget. The excellent advances in emergency and acute medicine mean that many more children, young people and adults now survive with an ABI, however, many of these individuals require early and continued access to neurorehabilitation to optimise all aspects of their physical, cognitive, behavioural and psychosocial recovery, and to maximise their long-term potential.
Neurorehabilitation is one of the most cost-effective interventions available on the NHS, but there are large variations in the provision and access to neurorehabilitation services across the UK.
The report outlines the critical role of neurorehabilitation in the ABI care pathway, and the need for Rehabilitation Prescriptions for all brain injury survivors following discharge from acute care so they know what neurorehabilitation they need. The report reviews the implications for children and young people with ABI when most of their neurorehabilitation takes place in the education system. The high incidence of ABI amongst offenders is discussed, as is the impact of neurorehabilitation on behavioural change and reoffending. The current issues in sport-related concussion are outlined as well as the need for an improved welfare system that is easily accessible.
The report summarises the key issues and makes a number of crucial recommendations. Chris Bryant concluded: “ABI impacts on many government departments so a task force is required to address the issues and recommendations as a matter of urgency. The APPG on ABI intends to unite all the departments involved in order to drive change for brain injury survivors”.
Copies of the report can be obtained from here.
Acquired Brain Injury
An Acquired Brain Injury (ABI) is any injury to the brain which has occurred following birth eg Traumatic Brain Injuries (TBI) such as those caused by trauma (eg a blow to the head from a road traffic accident, fall or assault), and non-TBIs related to illness or medical conditions (eg encephalitis, meningitis, stroke, substance abuse, brain tumour and hypoxia).
Neurorehabilitation is a process of assessment, treatment and management by which the individual (and their family/carers) are supported to achieve their maximum potential for physical, social and psychological function, participation in society and quality of living.
All-Party Parliamentary Group on Acquired Brain Injury
The All-Party Parliamentary Group on Acquired Brain Injury (APPG on ABI) was officially launched in November 2017. Chaired by Chris Bryant (Labour MP for Rhondda), there are five Vice-Chairs; Carolyn Harris MP (Labour MP for Swansea East), Chris Evans MP (Labour MP for Islwyn), Paul Flynn MP (Labour MP for Newport West), Stephen Hammond (Conservative MP for Wimbledon), Kevin Barron (Labour MP for Rother Valley) and the Treasurer is Lord Ramsbotham. The Secretariat is provided by the UK Acquired Brain Injury Forum (UKABIF) and Chris Bryant’s office.
The key objectives of the APPG on ABI are to:
- Raise awareness of ABI and seek improvements in support and services for people directly affected by ABI and also their families and carers
- Provide a voice for those who are not always heard by Ministers and MPs
- Be the main forum for ABI in Parliament, raising key issues across health, social care and welfare which all affect people living with ABI in the UK
The Secretariat is provided by the United Kingdom Acquired Brain Injury Forum (UKABIF) and Chris Bryant’s office.
UKABIF aims to promote better understanding of all aspects of ABI; to educate, inform and provide networking opportunities for professionals, service providers, planners and policy makers and to campaign for better services in the UK. It is a membership organisation and charity, established in 1998 by a coalition of organisations working in the field of ABI.
Upper Limb Stroke Rehabilitation Summer School
From 19 to 21 September 2018, more than 100 researchers and clinicians from 18 countries including UK, France, Sweden, Spain and Australia gathered for the first Upper Limb Stroke Rehabilitation Summer School, held at the Department of Rehabilitation Science at KU Leuven – University of Leuven in Belgium. The Summer School was organised and chaired by professors Geert Verheyden (KU Leuven, Belgium) and Yves Vandermeeren (UC Louvain, Belgium). It aimed at bringing together established research leaders, early-stage researchers as well as clinicians in the field to discuss this critical domain in stroke rehabilitation research and practice. The three-day Summer School offered plenary and parallel sessions including research seminars, clinical workshops, methodological discussions and a young professionals track focusing on promoting your research, writing and presentation, CV and job interview skills.
The event had an international faculty and the key topics discussed were:
- Gert Kwakkel (Netherlands) providing insight on understanding upper limb recovery early after stroke
- John Krakauer (USA) stating that upper limb stroke recovery remains a scientific and therapeutic challenge
- Nick Ward (UK) discussing the role of brain imaging in upper limb neurorehabilitation
- Friedhelm Hummel (Switzerland) argueing non-invasive brain stimulation as potential element of precision medicine for stroke rehabilitation
- Andreas Luft (Switzerland) exploring the link between motivation, reward and recovery after stroke
- Jane Burridge (UK) demonstrating novel technologies to support self-management in upper limb stroke rehabilitation
- Henk Seelen (Netherlands) showing the potential of sensor technology when assessing arm-hand skill performance in daily life conditions
- Yves Vandermeeren (Belgium) presenting the combination of transcranial direct current stimulation and motor learning principles in neurorehabilitation.
In addition, speakers of the Summer School also covered few other interesting topics including, the current state of evidence of non-invasive brain stimulation for upper limb rehabilitation after stroke (Jan Mehrholz, Germany), the understanding of a review of interventions and the concept of meta-analysis (Janne Veerbeek, Switzerland), combining musculokeletal and neurological concepts when considering post-stroke shoulder pain (Liesbet De Baets, Belgium), robotics post stroke for upper limb and cognitive rehabilitation (Thierry Lejeune and Martin Edwards, Belgium), and using robots to understand motor control and motor learning (Jean-Jacques Orban de Xivry, Belgium and Stephen Scott, Canada).
The Summer School ended with a presentation on the Queen Square intensive upper limb rehabilitation programme lead by Professor Nick Ward (UK). Kate Kelly (consultant occupational therapist) and Fran Brander (consultant physiotherapist) from the National Hospital for Neurology and Neurosurgery described the ethos behind the programme, interventions delivered and up to date results of this intensive programme that delivers 90 hours of UL therapy over a period of three weeks.
The Summer School on UL stroke rehabilitation demonstrated the progress made so far, yet clearly identified the lack of knowledge especially with regard to our understanding of early upper limb recovery. Besides the oral presentations, the Summer School included 27 poster presenters which allowed further interaction during the coffee/tea and lunch breaks. Participants very much valued the specific scope of the Summer School, the presence of national and international faculty and the opportunity to discuss the exciting but challenging upper limb domain of stroke rehabilitation.
Dr Geert Verheyden
Stroke Rehabilitation Research Lead
KU Leuven, Belgium
ACPIN AHP Stroke Abstract prize 2018
Prof Dr. Gert Kwakkel and Prof Jane Burridge award the ACPIN AHP Stroke Abstract Prize
Lisa Everton was awarded the ACPIN AHP Stroke Abstract Prize by Prof Dr. Gert Kwakkel and Prof Jane Burridge for her submission entitled: Swallowing therapy for dysphagia in acute and subacute stroke: Review – Cochrane Collaboration.
Lisa was presented with her award at the UK Stroke Forum 2018, for the highest scoring abstract from a coalition Allied Health Professional (AHP) member. Prof Jane Burridge says, “Lisa’s abstract reports an important systematic review and demonstrates the very high quality of AHP led research”.
ACPIN’s presence in the awards ceremony continued with Dr Ulrike Hammerbeck receiving the SRR Prize for Stroke Rehabilitation for her abstracted titled: The effect of high repetition reaching training early after stroke on cortical connectivity and impairment.
ACPIN congratulates Lisa Everton and Dr Ulrike Hammerbeck and thanks all those AHP members who submitted abstracts. ACPIN strongly encourages neurological health professionals to submit abstracts for both, oral and poster presentations at the Neurorehabilitation and Neural Repair Conference 2019. For dates and information, please visit here.
Prof Jane Burridge (non-voting)
Vice Chair and Governance
Dr Joanna Kileff
Secretary and Executive Assistant
Catherine Williams (non-voting)
Corinna Robinson (non-voting)
Dr Jonathan McCrea
Conferences and Sectoral Networks
Dr Ruth Turk
Professional Development and Practice
Publications and Knowledge Dissemination
Dr Praveen Kumar
Member without portfolio
1. To promote and facilitate collaborative interaction between ACPIN members across all fields of practice including clinical, research and education.
2. To promote evidence-informed practice and continuing professional development.
3. To provide encouragement and support for members to participate in good quality research (with a diversity of methodologies) and evaluation of practice at all levels.
4. To maintain and continue to develop a reciprocal communication process with the Chartered Society of Physiotherapy on all issues related to neurology.
5. To foster and encourage collaborative working between ACPIN, other professional groups, related organisations ie third sector, government departments and members of the public.