The recently published book titled Integrated ongoing neurological support in the community–making a difference, details how the lives of those who suffer neurological conditions, and their carers, can be greatly improved. A vital element to such rehabilitation is the continued, coordinated multidisciplinary care in the community (Kinnear et al, 2023).
In a large part of the book, 17 individuals with neurological conditions and their carers describe their experiences and how they benefited from such support provided by the medical charity Integrated Neurological Services. The charity based in Twickenham operates throughout the London boroughs of Hounslow and Richmond. Other key parts cover advances in rehabilitation, how issues can be addressed, and explain best practice based on the lessons of experience. Using examples of stroke, Parkinson's disease and multiple sclerosis, this article summarises what the book has to say on:
- Early diagnosis and assessment
- Importance of a personal health record
- Restoring function – harnessing neuroplasticity
- Immediate and ongoing responses to the presenting difficulties
- The value of working in groups
- Get out and about in your local community
- Importance of self-help and self-management.
Early diagnosis and assessment
It is important that the patient is diagnosed and assessed as early as possible. Early warning signs are often missed but knowledge of early signs and symptoms will support the person to understand what is going on and make informed choices about their lifestyle.
Caught early, the person can be taught to counteract the effect of disease before the associated abnormalities become a habit, which are harder to change.
Stroke
Some of the common early symptoms of stroke include:
- Weakness on one side of the face
- Weakness on one side of the body affecting arm and leg, which may affect sensation
- Speech may be slurred or the individual may have difficulty with comprehension/understanding and expression
- Sudden loss or blurring of vision
- Confusion
- Severe headache
- Loss of balance
- Loss of coordination
- Dizziness.
Parkinson's disease
In the case of Parkinson's disease, symptoms such as:
- Disturbances of sleep rhythms
- Sluggish bowels
- Bent posture
- Lack of arm swing on one side
- Mask-like facial features, due to stiffness in the facial muscles, which can lead to the assumption from others that the person is not engaging with conversations
- General slowness with or without the characteristic tremor; can be observed.
Multiple sclerosis
In individuals with undiagnosed multiple sclerosis, signs and symptoms such as:
- Numbness, tingling, alteration in skin sensation
- Reduced muscle power, muscle stiffness and spasms
- Problems with balance and coordination
- Fatigue
- Difficulty walking
- Vision problems, blurred vision, double vision
- Sexual problems
- Bowel and bladder problems
- Problems with thinking, learning and planning
- Slurred speech; may be observed.
Symtoms and diagnosis
If individuals in the community experience such symptoms, they must be prompted to call an ambulance. A greater response time from onset of symptoms may lead to delay in receiving appropriate treatment, such as clot-busting drugs for stroke, and increase damage to the brain.
The day of diagnosis is hugely important for someone with a neurological condition and for their family. A family member should be present when the diagnosis is given. The neurologist must help the person to be proactive in coping with the condition so that it does not dictate their lifestyle. The person needs to be supported in mind, body and spirit, the latter being the most important. Otherwise, the person can experience depression and this will also have a detrimental effect on the family. They need to understand their diagnosis, to learn how to counteract the effects of the disease physically, and to learn strategies to help them cope with a diagnosis which will vary as is also necessary for their family.
Once the diagnosis has been accepted, the person then needs to be supported to see how they can deal positively with the situation, and be prepared to move on with their life.
Importance of a personal health record
As a person's health changes it can be difficult to remember what has happened – what the symptoms were, who were the professionals involved, and what was the response (Box 1). For example, some medication can cause hallucinations and an increased likelihood of addiction, such as gambling. The individual in the community should be encouraged to keep their own record. This could include:
- Next of kin, who is involved with their medical care
- Diary of medical events
- General medical history
- History of present primary condition
- Level of function over 24 hours
- Medication/drugs – daily drug timetable
- Daily activities to improve or maintain function
- Daily routine – weekly routine
- Equipment
- Charts.
Box 1.Health recordMany patients have nothing other than a vague recollection of the key information needed to provide an adequate diagnosis and treatment plan. This is particularly complicated with certain specialties, including neurology, in which patients may struggle from memory loss or speech difficulties. Some people would struggle to maintain a complete and accurate health record book, but the insights that can be gained from having done so provide an invaluable tool for patients, their carers and medical staff they come into contact with. The hope is that the use of this health record book becomes standard practice.
This should help ensure that the person's medication and physical needs are understood if they need to be admitted to hospital, respite or hospice care. One of the benefits of this medical file is that it may help the rehabilitation service find the most efficient and effective way to support people in the community and their family, from diagnosis onwards, as it lends itself to audit analysis (Jacobs, 2009).
Restoring function: harnessing neuroplasticity
Neuroplasticity is the capacity of the brain to build new cells (neurons) and the pathways that connect them. New brain cells are encouraged to grow and bypass damaged areas, caused by injury and neurological conditions. The brain can make new connections between brain cells after an injury such as a stroke. These can be stimulated, for example, by repetitive movements of an affected limb.
Frequent repetitions of muscle movements or activities, guided by a trained worker or physiotherapist, will retrain the brain, and cause it to create new neural connections and pathways. The professional guidance of what to do can be written out as part of the care plan so that the patient/client can work independently or with a carer. For example, the harder a stroke survivor works to retrain the brain, the more likely it is that they will see a positive outcome. Studies in humans and animals have shown that hundreds of repetitions may be required per day to elicit change (Rådestad, 2019).
Immediate and ongoing responses to the presenting difficulties
The presenting difficulties need to be immediately addressed by:
- An explanation of the condition
- Emotional strategies to give the person hope and encouragement
- Strategies such as education to teach the person how to help themselves.
Box 2.Maggie, carer for Trevor, who is a stroke clientAfter leaving hospital, our physiotherapist, Judith, set about changing Trevor's way of thinking. Through Judith's programme, she encouraged Trevor to use his paralysed side, to stand and walk using a ladder chair, eventually leading to him walking with a narrow-based quad stick and close supervision.
Similar to an athlete in continuous training for their sport, someone with a disability must prepare their mind, body and spirit for their day so that they can enjoy it and carry out what they need to do.
Early intervention
Depending on the damage, an early intervention should be started where the patient is (e.g. in the bed), to help them move more independently and to make themselves comfortable. This can be done through therapy which encompasses movement, speech and function, helping them understand what has happened and how they can help themselves.
In the instance of stroke patients, nurses can guide them to move the limbs and the body in as normal a way as possible by giving instructions to the patient in the first-person singular; with repetition the patient may start to respond actively. An important aim is to immediately maintain a normal range of movement to prevent contractures.
Reaching and maintaining maximum function for independence
It is important to:
- Have good posture with balance in sitting and standing
- Maintain full range of movement
- Strengthen core control
- Awareness of normal positions of relaxation – to do this, the person will need to relearn how to function optimally
- Gentle stretching and moving before getting out of bed, which can warm the muscles and help prepare the person for the day
- If facial muscles are affected, it is important to stretch the muscles and maximise facial expression for better social interaction, using the ability to smile
- Getting out of a chwair or bed can become difficult, so it is important to teach the person how to use their body well, ensuring that the head comes forward over their toes when standing up and sitting down. When sitting and relaxing, it is important that the person learns to put their weight onto the affected side to stimulate the muscles over the shoulder, while at times, stretching their fingers or clasping their hands together, which helps stretch the webs of the fingers, or stretching the hands (Figures 1 and 2)
- A good strategy is to create a rhythm to the day – giving time for preparation, work, play and rest. As part of this routine, eating well and engaging in activities that provide mental stimulation are vital.
A good diet
A healthy diet can help mental and physical health and provides more energy, which helps reduce depression. An ideal diet would consist of vegetables containing minerals, vitamins and fibre, with proteins contained in lean meat, fish and eggs, which contain chemicals to regulate thoughts and feelings. For people with Parkinson's, if taking Levadopa, it is important to take the medication 30 minutes before eating, as protein reduces the effective absorption of this drug.
Guidance and information
The person and their family will need a social work assessment and support as they learn how to negotiate the social care system, especially in complex situations where they will need ongoing care and support to find the best help in a timely fashion. This intervention needs to be ongoingly monitored by health and social services to ensure that the service is beneficial for the person and their family as well as being cost effective.
Information can be found from relevant support organisations, for example the Stroke Association, Parkinson's UK, the Multiple Sclerosis Society and the Motor Neuron Disease Association.
Emotional wellbeing
Emotional wellbeing can be overlooked, but it is critical to enable the person to be as well as they can be. Teaching videos can be found in many places, including online and in the form of apps. The Integrated Neurological Services' Mind, Body, and Spirit group is all-encompassing and holistic, helping those with neurological conditions and their carers. Those who attend share what they learn about health and wellbeing from doctors, scientists, books, videos and talks. The group supports them mentally, emotionally, physically and spiritually. Even when living with a life-long health condition, there is always more that can be done to improve the quality of life, health and wellbeing.
Michael J. Fox is a wonderful example of rising to the challenge of a diagnosis of Parkinson's early in his career as an actor; he was able to continue his career and then raise millions of dollars for research towards this condition. His guiding principle is ‘Live in the moment, enjoy the day, make the most of what you have’ (Fox, 2020).
The value of working in groups
Meeting other people in a caring environment can be very supportive. Working with people with the same diagnosis can foster a feeling of solidarity, enabling people to share issues and challenges. Together, people can often find solutions by sharing how they cope. Together, they have a vested interested in finding ways to resolve issues.
‘…just what I needed as we were a group of clients in the same boat although at different stages, different symptoms, and different medications. The group forum allowed for all of us to share experiences which gave me a lot of information.’
Bindu, Parkinson's client
Self-help therapy are where an initial social session leads to therapy to help individuals cope with different situations met throughout the day—in sitting, lying, standing and walking, with ways of learning to improve the tasks they are finding difficult to do. The therapy sessions can then lead to different activities which can help in confidence building, plus finding new avenues of interest. For example, creative writing, yoga, art, music etc. This will also help people feel less isolated in an environment where there is guidance and support.
Groups for carers
Family and friends provide the most support for people with disabilities, and, as carers, their health and well-being is of paramount importance. Carer groups are extremely helpful, providing necessary support in a safe environment for the family member. This helps them feel comfortable to discuss anything with people who understand their present circumstances. Here, their wellbeing is nurtured with opportunities for mutual learning in how to support the whole family in a holistic way. Sara Challice's book, ‘Who Cares?’, recounts her experience as a carer and is a valuable guide to avoiding stress and burnout (Challice, 2020).
Get out and about in your local community
People should be encouraged and supported to get out into their local communities to continue to enjoy activities that they loved, to try something new on their own, or in organised outings.
Outings can also be arranged to different environments such as going to the theatre, going to a park, going to shops. Relatives are encouraged to join the participants so they, the therapy staff, and volunteers can learn how to support the person in the community.
Individual participants can be supported to relearn activities such as using buses and trains which often entail using an escalator (Box 3). Once they are confident, then this can lead to greater independence and possible return to work or finding another suitable occupation. A great example of this is ‘Jackie’ who came to the Integrated Neurological Services unable to use public transport.
‘…an occupational therapist took me out to teach me how to use an escalator in Dickens and Jones. We went up and down, again and again on the escalators, which made such a difference to me as I had been so scared. Now I could go independently to see my daughter by the Underground – this was some 5 years after I had had my stroke.’
Jackie, Stroke client
One-to-one sessions can be run to improve the individual's response in the group session, which is a preparation for the day either at home or at work. For example, speech – either individual coaching or a speech-aphasic group, or a play reading group can be initiated to improve confidence and voice production.
When people with neurological conditions get out into their local community it not only helps them feel less isolated but also gives the community itself a greater understanding of disability, and how disabled people can be assimilated, accepted, and valued. For example, the Paralympic Games and the Invictus Games.
Importance of self-help and self-management
A vital part of all activities is the provision of knowledge and skills enabling those with neurological conditions to self-help and self-manage.
Recent research by the Health Foundation (Deeney et al, 2018) shows that self-management by those with long-term conditions leads to fewer emergency admissions, A&E attendances, and fewer GP appointments. The MS Society also reports that self-management and preventative measures supported by trained healthcare professionals, such as the community nurse, are invaluable to people with neurological conditions to prevent decline and ill-health.
A good example of what can be done is a ‘Taking Back Control Programme’. The programme addresses individual needs and issues, working towards enabling each participant to develop the strategies needed to self-manage their symptoms of anxiety, stress and depression to enhance their overall well-being. Through sharing the experience in a small group setting, participants are able to learn from and support each other. Each session provides a focus on different symptoms and emotions, and the possible strategies that could be implemented to work towards self-management.
Integrated Neurological Services was established in recognition of a need for regular, ongoing, self-help therapy.
Crucial needs
It is crucial that the neurological team, both in hospital and in the community, liaise closely with social services. This helps healthcare workers better understand the neurological conditions from diagnosis onwards, and help individuals and their carers improve their quality of life. The team will also utilise the skills of different members of the team—neurologists, GPs, community nurses, physiotherapists, occupational therapists, speech and language therapists, dieticians, psychologists, bioengineers, technicians, physiologists, counsellors, carers, managers—when there is a need to address complex problems.
Health and social services can together determine a personal budget based on the person's care and support needs. This budget can either commission support or be given to the person to manage themselves. The benefits of the person managing themselves is that they can recruit and employ carers. The carers can be trained specifically for the person they are supporting.
People with long-term neurological conditions need ongoing support for life. It is very important to achieve a fulfilling life despite the condition. A good example is given by Professor Jelinek who himself has MS and has written a book called ‘Overcoming MS’ from personal experience (Jelinek, 2016). Coping strategies will need to be organised in advance with ongoing monitoring to find the most effective and efficient way of supporting such people and their families. This includes their opinion and ideas to enhance harmony in living and dying.
A book by Dr Craig Hassed, The Essence of Health – the seven pillars of well-being, provides a comprehensive view to optimise health for everyone encompassing education, stress management, spirituality, exercise, nutrition, connectedness and the environment irrespective of what condition they have (Hassed, 2008).
Further information on how the lives of those who suffer neurological conditions, and their carers, can be greatly improved, can be found in the book, ‘Integrated ongoing neurological support in the community–making a difference’.