Nearly two-thirds of specialist nurses are reluctant to discuss disability with patients who have multiple sclerosis, which has a knock-on effect on broaching the topic, a survey has indicated.
The survey findings, shared exclusively with Nursing Times, reveal that 64% of specialist nurses admit there is a reluctance to talk about disability with MS patients.
“We need the right infrastructure to allow earlier and effective conversations about treatment and disability”
The most common reason given being that it might make patients feel uncomfortable, followed by lack of time in the consultation and that it might make the health professional themselves feel uncomfortable.
Disability was “routinely discussed” with newly-diagnosed patients 67% of the time, according to MS specialist nurses who responded to the survey carried out for a pharmaceutical company report.
In addition, 68% of MS specialist nurses reported that they spoke with patients about fears around disability “often”.
In contrast, only 50% of MS patients said disability was discussed at the diagnosis stage and, on an on-going basis, the “disability conversation” only occurred in 34% of appointments.
According to healthcare professionals, the main fears and concerns raised by patients about their condition are its impact on their independence, ability to work, family role and their mobility.
“It is essential that treatments are considered in a timely manner”
The survey, carried out by Sanofi Genzyme, involved 100 health professionals, of which 25 were specialist nurses, as well as 120 patients with MS. The data was collected from July to October 2016.
The findings were used to explore attitudes and behaviours around the treatment of MS in the UK, with the aim of identifying the gaps in knowledge, understanding, conversations and care plans.
Some of the findings appear in a report, published earlier this month and titled Missing Pieces (see PDF attached below), but Nursing Times has also been access to a breakdown of how nurses responded to the survey and further analysis made by a nursing expert in the area of MS treatment.
The report suggested that some patients may be missing out on disease modifying treatments (DMTs) that could put off disability, allowing for a more fulfilled life for longer.
It found 74% of healthcare professionals thought people with MS faced delays in being initiated onto a DMT, in particular, with the main reason being limited access to MS specialist neurologists.
Treatment approved for relapsing remitting MS in Scotland
In addition, 62% of MS specialist nurses and 47% of MS specialists also felt that this delayed initiation is due to a “lack of healthcare facilities needed to deliver DMTs”.
The previously indicated, as well as difficulty in prompt access to treatment, the survey suggested many patients were still not receiving advice about delaying disability from healthcare professionals.
Two thirds (65%) of patients said maintaining independence was their main treatment goal, followed by reducing relapses. But 22% said the healthcare professional they saw did not discuss treatment goals with them.
There is also a lack of clarity and information surrounding MS. Over a quarter of people with MS (28%) were not aware that the number of relapses in MS was not directly linked to difficulty working or performing everyday tasks such as walking, concentrating, etc.
When aware of this, 66% saw delaying disability as a more important treatment goal than reducing the frequency of relapses. Additionally, 24% of patients were not aware that treatments helped to delay disability.
The report also discussed the Expanded Disability Status Scale (EDSS) – the tool most commonly used to quantify disability and monitor progression of the level of disability over time.
However, both clinicians and patients did not necessarily think the EDSS tool measured the full extent of their experiences linked to disability.
Many healthcare professionals said they relied on assessing disability progression simply via “visual observation”. This was especially true of MS nurses, where 96% stated that out of all the ways to assess disability, they use “visual appearance” the most.
Exclusive: Nurses reluctant to discuss disability with MS patients
The report suggested this trend was perhaps due to the fact that nurses saw the patients they were treating more often than any other clinician in the multi-disciplinary group, so were better able to pick up on changes from one visit to the next.
Emma Matthews, an MS nurse specialist at Northampton General Hospital NHS Trust, said: “It is essential that treatments are considered in a timely manner to increase the likelihood of preventing long-term disability and ultimately to decrease the chance of MS impacting day-to-day quality of life.
“The UK MS community needs to create the right infrastructure to allow for earlier and effective conversations about treatment and disability,” she added.
Q&A with MS nurse specialist Emma Matthews:
Exclusive: Nurses reluctant to discuss disability with MS patients
Do you feel that MS Nurses are given all the information/support needed to fully inform patients about DMTs?
- The MS Trust, MS Society and other organisations provide information, conferences and educational material, but us nurses very rarely have time to read, remember and put into practice. Patients do not always understand the information enough to use this alone to make such an important decision and rely on the MS Nurse for further discussion and clarification.
- MS nurses are usually at the forefront of supporting the DMT journey once a decision to treat has been made by a Neurologist – this includes seeing the patient to discuss DMT, completing the ‘paperwork’, raising the prescription, arranging the delivery of treatment, patient monitoring requests and result review, clinic follow-ups, side effect management, phone calls about issues are just some of what it entails…there are now such a large number of DMTs for people with RRMS, the pressure on time is huge for MS Nurses and their teams, and with it all likely to continue to become more complex and the amount of drugs available increasing the demand and impact will just build. The patients not eligible for treatment will suffer due to this…
Why do you think so many people with MS choose not to take treatment?
- Just today, I have seen a gentleman who has been offered DMT but has declined at this point. He is recovering from a relapse that began last September and although continues to have slowed mobility and increased fatigue, feels that with his other medical conditions and medications, he would be better not to add to this DMT possible side effects and further medication. He has had several appointments with MS nurses and Neurologist and has made an informed choice. This choice is supported. Obviously if he changes his mind or he relapses again in the near future, we are happy to re discuss the situation with him, but ultimately, it is patient choice.
- Perhaps the patients are sometimes put off/frightened by the amount of treatments available, the side effects of certain treatments, the monitoring commitments of treatments, almost information overload rather than being not informed at all…
- Ultimately, in most cases it is the patients that make the decision on what treatment they try– however for the patient this may be too much to decide on and so they decide not to decide!
- There are still patients who are not seen regularly, perhaps due to own choice, although some due to lack of understanding of the importance of follow up or the fact that people still may not know MS support exists… who are not reporting in when relapsing and therefore not being offered appropriate therapy. With caseloads being so large and the lack of database information, it is impossible to identify these people. Continuing to raise awareness of MS and its services on offer can only help this…
What improvements do you think could be made from a MS nursing point of view?
- Firstly, starting at the beginning, building a database and identifying caseload and local service needs so that service delivery can be tailored to the needs of the patients in each locality.
- Should we have MS specialist nurses specialising in different aspects of MS nursing, i.e. complex needs, DMT, newly diagnosed, palliation?
- Raising the profile of MS and its impact on health and social care longer term to perhaps put us higher on the agenda for care provision and funding…
- I feel the future of MS care must include building on multi-disciplinary teams, collaborative working with nurses, occupational therapists, physiotherapists, social care workers and palliative teams to encompass the needs of this long-term condition.
- Refocusing on health promotion like the benefits from better lifestyle, more exercise, balanced diet, no smoking, management of other health conditions as well as DMTs.
- Perhaps in some cases treating early may be relevant however; this is an ongoing conversation, one which MS specialists from around the UK will need to agree on, hopefully sooner rather than later…
- Focus on progressive disease.