Raising the bar for MS: Health and wellbeing

Dr Agne Straukiene talks to us about health and wellbeing, and why this MS workstream will help tackle variance and raise the bar for people with MS.Agne is the lead for this workstream – find out more about the workstream itself here or learn more about the background to this work.

Why does ‘health and wellbeing’ matter?

‘Healthcare is undergoing drastic changes in the 21st century. In a few years’ time we will look back and ask ourselves how we could have been practicing medicine so primitively. I believe those practitioners who embrace the Functional and Integrative Medicine paradigms will be at the forefront of healthcare.

Why is health and wellbeing especially important in MS?

‘I am inspired by the stories of patients living with MS. I am also astonished by some patient’s strength to take the extra mile to be a better version of them living with a disability. For some, MS may be physically invisible. There are patients that clearly know their limits and this helps them in overcoming their health problems. And there are some others who do not see their potential as yet – these people require the most help.For me the key element is to distinguish people with MS who are in remission from those who are in an active phase of disease, and what the factors are that influence that outcome. From real life evidence and my own observations
I have noticed that people who are well informed and fully in charge of their condition live a much healthier life. They are more positive, energetic and also resilient to the events and symptoms of their MS. Healthy living only works if it holds a value for people.
I have spoken to many people with MS who navigated various different changes in their lives and I’m so passionate about taking proactive measures to support a healthy lifestyle. I think that education for people with MS is essential; otherwise they are not informed of how to manage their condition.
I strongly believe that knowing your limits helps to overcome them.’

Why are you passionate about your particular work stream?

‘I want my patients to live a long, healthy and present life. That’s why I’m so passionate about taking proactive measures to support a healthy brain before alarming symptoms like disability and memory-loss occur in MS.
There are multiple modifiable risk factors that influence the likelihood of MS disease progression. This means empowering and shaping the health my patients want to have as they age. Together we just need to put a little effort into the present.

What does it look like to support someone’s health and wellbeing in practice?

MS patients all go through a difficult time; they have challenges, worries, and fears. I am passionate about giving the ability to people to accept whatever their challenges are whilst still finding joy throughout the struggle. I have an increased awareness towards people with a chronic condition who require being looked after more holistically rather than just with regards to their MS.Both the mind and body of a patient need to be taken into consideration to promote healthy wellbeing. By integrating modern diagnostic tools and disease modifying treatments (DMTs) with other modalities like diet, movement, cognitive training, social activities, meditation and mindfulness, and intensive monitoring of metabolic and vascular risk factors, I believe we can have a positive effect not on just health but also interpersonal relationships.’

What is your vision for your work stream and how can others get on board?

‘Finding health and wellbeing is the greatest desire for doctors and patients who live with a chronic condition such as MS. I don’t think what we currently have to offer MS patients is enough.Other factors need to be taken into consideration. Different decisions need to be made in medicine to enhance patients’ health. Integrative practice should be in place which reaffirms the importance of the relationship between practitioner and patient.
The main medicine focus should be on the whole person, evidence based and using all appropriate therapeutic approaches and disciplines that are required to achieve optimal health. This requires longer consultation time.
There are so many resources that can be joined together to give this approach of healthy living and prevention:
  • Patient education through healthy lifestyle group clinics and retreat weekend away events.
  • Compassion mind training, the next generation of cognitive based therapy.
  • Having HOPE programme trained facilitators on board would help alleviate human suffering not only for patients but also for doctors.
  • Healthy life access should be set up at the local sites (healthy lifestyle teams are aligned with each Trust e.g. the HOPE- self-care programme).
  • Focus on patient groups by defining their level of activation such as understanding their present level of knowledge, skills and confidence around MS. We could gather this information via the ‘Patient Activation Measure’ (PAM) survey.
  • Running MDT clinics where we assess patients MS activity, overall body metabolism, co-morbidities and define physical activity and recommend a diet plan could be the way forward.
  • I would like to have more digital tools such as an MS connect app that allows monitoring patients’ health and well-being remotely.

Can you give some examples of health and wellness initiatives you already use to support people with MS?

I work closely with the healthy lifestyle teams in the Torbay area who offer a wide range of healthy lifestyle information, advice and support. They help patients to quit smoking, get more active, eat more healthily, lose weight and improve their wellbeing.I find the HOPE programme has huge value for the MS community. The HOPE programme is based on scientific research from the disciplines of positive psychology, cognitive behavioral therapy (CBT) and mindfulness and has been developed by a team who have created and evaluated self-management interventions for over 20 years. Several studies have shown that the HOPE and iHOPE Programmes help to improve positive mental wellbeing, confidence, and gratitude and hope whilst also reducing depression and anxiety. It runs at 97 UK locations and is accessible to anybody living with a chronic condition. I have successfully set up a healthy lifestyle group clinic for newly diagnosed MS patients in Torbay.I am in the process of creating an MS connect app which encourages patients to self-manage their condition. This should improve self-efficacy and concordance with medication. The whole intention is to empower people with MS, allowing them to have good control of their condition and an understanding of the impact of healthy living on it. This is highly appreciated by our MS patients and the healthy lifestyle group clinic model can be introduced at other NHS Trusts without any significant cost. I am following the Torbay Hospital Rheumatology team’s example for creating this app.
Overall, having an evidence based integrative medicine model without a significant shift from Western medicine may help to achieve a more personalised patient’s care model.
  • Changing the concept of our clinical consultations, using more technology for monitoring and following up patients may save our pressurised time.
  • Focus on healthy lifestyle prevention programmes for family members of our MS patients.
  • We have to work harder when we are getting old to maintain health. Healthy aging really matters in MS disease and together we can change and influence this.
In my imagination, the broader scope of this work could be creating healthy lifestyle rehabilitation centres. This could potentially:
  • facilitate various activities such as hydrotherapy, ergotherapy, kinesiotherapy, therapeutic baths and cognitive rehabilitation programmes,
  • identify and define the key health and wellbeing issues and needs impacting on people with MS,
  • build up bonding within MS communities and create and support connectedness,
  • influence wider decision making processes that affect health and wellbeing when living with MS.

What one thing do you think – if we got it right – would have the biggest positive impact on the MS community?

The creation of the MS Connect app.Improvements in the treatment of MS have led to far more individuals achieving remission and reduced disability but despite this there is a doubling of patients requiring regular follow up and monitoring in Neurology departments across the UK without an equivalent increase in MS clinical staff.With this, treatments are becoming more complex and require regular monitoring for safety reasons, with many drugs prescribed by the Neurology department rather than the GP. This also impacts staff time – we need new ways of optimally managing MS patients.Recently, there has been a shift in the management of long term conditions towards supporting and encouraging patients to self-manage and this should improve self-efficacy and concordance with medication. This should allow MS services to see and support additional patients without an increase in resources or causing a delay in follow up appointments.[expand title="More detailed information about the app here" tag="h3"]

The MS Connect app

Easily accessible information Patients cannot self-manage if they do not know enough about their disease or the medications they are taking. Therefore, being provided with appropriate information they can trust, which is easily accessible in one place and easily updated, is essential. The internet provides various but unfortunately often contradictory sources of information and patients find it difficult to know what information to trust. This is particularly relevant at the onset of disease when treatment regimens are intensive and complicated. This is the time when patients are feeling unwell, in pain and vulnerable with no background knowledge of their condition.Calendar function Treatment of MS disease has become increasingly complex with the advent of new medications such as biologic therapies requiring regular monitoring for safety. They are usually prescribed by the MS team and are delivered by a home care provider. Patients need to have their blood tests taken on a regular basis and request more supplies; otherwise there can be gaps or delays in treatment leading to disease flare ups. Some people need to be reminded to do this. In addition, there are often a range of additional appointments patients need to attend, including visits to OTs, podiatrists and physiotherapies, radiological investigations and, sometimes, intervention such as a lumbar puncture. They often have other comorbidities requiring an outpatient review e.g. ischaemic heart disease or diabetes. Therefore, it can be very easy to miss appointments and, on occasions, this can delay their treatment as a result. A calendar function to remind them when and where their next outpatient appointment is, when to attend radiology for a scan, when to have their monitoring blood tests checked will improve outcomes.Graphical PROMS function With an interactive PROMS function with information such as EDSS score, anxiety, depression, number of relapses, PAM ‘Patient Activation Measure’, especially with the ability to graph the results, an individual could check their score weekly or monthly/yearly and could see a slow improvement in their results, thus encouraging compliance to medication or healthy living.[/expand]
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MS Academy was established five years ago and in that time has accomplished a huge amount. The six different levels of specialist MS training are dedicated to case-based learning and practical application of cutting edge research. Home to national programme Raising the Bar and the fantastic workstream content it is producing, this is an exciting Academy to belong to.