Author: Jenni Bell

Increase Rehabilitation Time for Stroke Patients – NICE

The amount of rehabilitation time offered to adults in England who have had a stroke should be significantly increased from previous recommendations, the National Institute for Health and Care Excellence (NICE) said.

Previous guidance from 2013 recommended initially offering at least 45 minutes of relevant stroke rehabilitation therapy for a minimum of 5 days per week. However, NICE noted that current rehabilitation practice was “inconsistent” and not always provided to people after stroke. 

In an updated guideline, NICE said people aged over 16 years who had experienced a stroke should be offered needs-based rehabilitation for at least 3 hours a day on at least 5 days of the week.

Suitable rehabilitation would include physiotherapy, occupational therapy, and speech and language therapy.

More intensive physiotherapy led to faster recovery

Evidence reviewed by NICE’s appraisal committee found that “more intensive physiotherapy improved quality of life and activities of daily living”, and that stroke patients and their families and carers “felt that more intensive physiotherapy helped them recover faster, especially if it was delivered in the first 6 months after stroke”.

According to the Stroke Association, 85,000 people in England have strokes each year, while over one million people are stroke survivors. 

Stroke is one of the biggest causes of death in England. In 2017-18 cerebrovascular diseases, including stroke, accounted for just over 29,000 deaths in England per year, making it the 4th largest cause of death. However, improvements in stroke care and new, acute treatments have increased the overall survival rate from a first stroke over the past 10 years. This has led to increases in the number of people in the community needing post-stroke care and rehabilitation.

Extra costs should be weighed against longer term savings

While acknowledging that the updated guidance could impact on available resources, the NHS spending regulator predicted this would be “balanced out by long-term health benefits and potential care savings”.

We recognise the challenges the system faces in delivering these recommendations, not least the problems inherent in increasing service capacity and staff. We also know current practice is inconsistent, even when it comes to implementing our previous recommendations. But equally it shouldn’t be underestimated how important it is for people who have been left with disabilities following a stroke to be given the opportunity to benefit from the intensity and duration of rehabilitation therapies outlined in this updated guideline.”

Professor Jonathan Benger, chief medical officer at NICE

Dr Maeva May, associate director for policy and research at the Stroke Association, said: “Sadly, stroke is still a leading cause of adult disability and it has wide-ranging impacts so it’s vital that every stroke survivor gets the support they need to give them the best chance of recovery.

“Research shows that frequent and more intense rehabilitation leads to better recovery following a stroke but many stroke survivors only receive a fraction of what this guideline recommends, leaving many without support and limiting their improvement post-stroke.

“Every stroke is different and so is every recovery, so it’s important that stroke survivors can access person-centred support for as long as they need it, so they can regain their independence and rebuild their lives after stroke.”

NICE’s update guideline also makes recommendations in several other areas, including offering ‘telerehabilitation’ instead of, or as well as, face-to-face therapy, assessments for fatigue, and vision checks from an orthoptist.

The updated guidance was in line with the recently published National Clinical Guideline for Stroke, NICE said.

CMTUK membership becomes discretionary donation-based

CMTUK is one of the first UK charities to move from subscription-based membership to a discretionary donation-based charity

From 1st October 2023, CMTUK will move from a subscription-based membership ‘fee’ to a discretionary donation-based charity. It will no longer be a mandatory cost to become a member of CMTUK. The change from subscriptions to donations is a move to reach more people affected by CMT (Charcot-Marie-Tooth disease) than ever before and remove any barriers to those seeking the charity’s support. CMTUK is the UK charity dedicated to supporting people living with CMT in the UK. The change also ties in with the start of CMT Awareness Month, where the charity CMTUK aims to increase awareness of the condition during October.

In the UK, some 25,000 people are thought to have CMT, making it the most common inherited neurological condition. However, many people are not aware of CMT, which can make everyday living and early medical diagnosis more difficult. CMT damages the peripheral nerves, which means that muscles become progressively weaker over time, particularly in the hands and feet. These nerves run from the spinal cord to the extremities and are responsible for passing on commands from the brain to the muscles in the arms and legs, and for passing information back to the brain about sensations, such as pain, heat, cold and touch. Because of the nerve damage, people with CMT may find that their muscles particularly in their hands, arms, feet and lower legs become weaker over time, and the sense of feeling can become dull or numb in the same areas.

Chief Executive of CMTUK, Simon Bull, said “It is a significant step in our charity’s history by replacing the mandatory membership fee with a suggested annual donation. As CMTUK is a critical support line for those who need it the most, we believe it is morally the right thing to do. We are confident that those members who can and have previously contributed by membership fee will continue to donate in the new framework. However, crucially those who simply cannot afford to join will now be able to access all services free of charge. CMTUK strives to be an inclusive charity and to make membership accessible to the CMT community.”

Simon goes on to say “We support 100s of members from the CMT community, including those living with the condition, their family and friends, carers, employers and schools as well as medical professionals. We support our members with unlimited access to the CMTUK helpline, practical guides and leaflets, priority access to our CMTUK events (including our annual conference), ComMenT magazine, access to CMT Kids & Teens, an alert card, regional support groups and Facebook members pages, a safe and supportive place to meet others from the CMT community.”

Simon adds “The CMT community is truly amazing. They are very supportive of each other and our charity, and their fundraising efforts are outstanding. Our charity relies on donations and fundraising to help support the UK’s CMT community. One of our biggest events in the year is CMT Awareness Month in October. This year, the theme is ‘Shine a Light on CMT’. We have lots planned to include giving talks about CMT around the UK, linking with many medical organisations to highlight CMT, illuminating buildings in CMT colours, sharing bite sized information videos from CMT specialists and lots more.
To find out more about CMT Awareness Month, please visit

Assessment of mental health issues in Parkinson’s disease

Parkinson’s Academy Runner up 2017
Dr Ravisankar Moorchilot and Dr Mark Vettasseri, Queen’s Medical Centre, Nottingham

Mental health problems like apathy, anxiety, low mood, sleep problems, cognitive impairment and psychosis are well known to be associated with Parkinson’s disease. At any given time, up to 40% people with Parkinson’s disease will experience anxiety, up to 40% will have depression and up to 50% will experience mild psychotic symptoms1. The majority of mental health problems in Parkinson’s disease are not optimally managed2. Dementia is a common feature of the later stages of Parkinson’s disease with estimated prevalence between 24-31%3. The APPG 2009 inquiry revealed many people with Parkinson’s disease are not receiving specialist mental health services4. Access to treatment for mental health problems in Parkinson’s disease is poor1.

To assess the effectiveness of assessment and management of mental health issues in Parkinson’s disease in our setting a study was conducted.


  1. To do a survey among health professionals in secondary care delivering care to patients with Parkinson’s disease regarding management of mental health issues in Parkinson’s disease.
  2. To review the management of mental health issues in patients with Parkinson’s disease by reviewing the clinic letters and other correspondence letters from secondary care.


A survey was conducted among two geriatricians, two neurologists and three parkinson’s nurse specialists. We also reviewed the clinic letters and correspondence from secondary care related to Parkinson’s disease in 53 cases looking at whether mental health issues were addressed in the previous one year.


The survey among the health professionals revealed about 85% feel patients did not receive adequate care for their mental health needs. The majority felt confident of assessing and diagnosing mental health issues but did not feel confident in managing the mental health problems. All of them felt access to mental health problems is not adequate and for those who had mental health review adequate feedback was not received back from the community mental health team regarding their assessment and management plans. The survey also showed that there is no adequate time available for proper mental health assessments during the routine follow up.

On reviewing the clinic letters and other correspondence letters of patients from secondary care, symptoms related to the mental health issues were asked in less than 50% of the patients during the previous one year. Symptoms addressed the most included hallucinations in 43%, sleep disturbances in 40%, cognition in 39% and mood problems in 30% of cases. Those that were less commonly addressed were agitation and aggression in 7%, psychosis in 10%, anxiety 17% and impulse control disorders 17%. While assessing the memory problems screening tools were used in only in 53% cases who had symptoms of memory problems, 20% cases with anxiety and 18% cases with depression.


We conclude that mental health assessments in Parkinson’s disease need to be improved. One of the key barriers to doing adequate assessments is inadequate time available during the follow up review in the clinic. As there is no joined up working between the community mental health team and secondary care it was difficult for the secondary care team to get adequate feedback regarding management plans made for those who were reviewed by the community mental health team. Asking patients to complete a non-motor questionnaire prior to the clinic review which will help to open up the mental health symptoms and, if needed, further assessments and management can be done. We are working with our mental health colleagues to develop a pathway for managing mental health issues in Parkinson’s disease. We also feel having a mental liaison service working alongside our current team will help in supporting the assessments and improving the communication between the secondary care and the community mental health team.


  1. Parkinson’s UK. Psychological services for people with Parkinson’s disease (2009)
  2. Dobkin RD, Rubino JT, Friedman J, Allen LA, Gara MA, Menza M. Barriers to mental health utilization in Parkinson’s disease. J Geriatr Psychiatry Neurol. 2013;26(2): 105-116
  3. AarslandD, Zaccai J, Brayne C. Asystematic review of prevelance studies of dementia in Parkinson’s disease. Mov Disorders 2005 Oct,20(10):1255-63
  4. All party parliamentary group 2009. Please mind the gap- Parkinson’s disease service today