ClinicSpeak: How much help do families need to cope with MS?

Families are affected much more than we realise by multiple sclerosis. #ClinicSpeak #MSBlog #MSResearch

“Being diagnosed with MS triggers a host of emotional reactions and uncertainties. The psychological impact that MS has on you and your family is massively underestimated.”

“The paper below tries to review the evidence of using a strengths based approaches to help families manage the uncertainty associated with a progressive neurological disease such as MS. The review clearly highlights the need for more work in this area.”

“In my sociology course at medical school we learnt about Helen Kübler-Ross’s five stages of grief, best known by the acronym DABDA (Denial, Anger, Bargaining, Depression and Acceptance). For those of you with relapse-onset disease, not only do you have to go through these stages when you are diagnosed with MS, but you go through them again when you enter the secondary progressive phase of the disease. In addition, many family members experience the same emotional stages by proxy. MS is a double-disease; it hits you a second time when, and if, you enter the clinically apparent secondary progressive phase of the disease!”

“The realisation that you have either missed out on DMTs, or that the DMTs have failed, leads to the re-emergence of grief and the five emotional stages that go with it. The anger you experience is more often than not directed at the medical team for being impotent to stop the disease; exposing unrealistic expectations, which were made to give you hope. As a result of being an outspoken critic of therapeutic nihilism – the blight of our profession – a proponent of early effective treatment and the holistic management of MS, I seem to take a lot of flak. Managing MS can be emotionally exhausting! For example, I saw a new patient this week who despite having very active MS and having being advised by several neurologists to start DMTs, and didn’t. She now presents with progressive unsteadiness of gait and weakness in her lower limbs. When I explained to her and her husband that she has now entered the SP phase of MS and that she was unlikely to benefit very much from the licensed DMTs, she was very, very, upset. She had just been rediagnosed with MS, only this time SPMS with all the negativity that goes with this stage of the disease. I could see her beginning to go through the emotional stages again; DABDA.”

“As a pwMS you need to know about the stages of grief and recognise your emotional reactions to the diagnosis and the onset of the progressive phase of the disease. The truth is we don’t have any therapies to stop or slow disease progression at present, but we are working on it. Ocrelizumab is just around the corner for PPMS and there are other progressive trials running at present. If you have symptoms that are impacting on your quality of life we can help. You would be amazed at what a difference effective symptomatic treatments can make to your life.”

“Finally, I we would like to add an extra A onto DABDA for MSers, ie. DABDAA. The extra A is for anxiety. The uncertainty that a comes with a diagnosis of MS is usually not appreciated enough. If you need help coping with anxiety or any of the other emotions mentioned above please speak to your medical team.”

Tams et al. Helping families thrive in the face of uncertainty: Strengths based approaches to working with families affected by progressive neurological illness. NeuroRehabilitation. 2016 Mar 23.

BACKGROUND: Management of the uncertainty inherent in a diagnosis of a progressive neurological illness is one of the major adjustment tasks facing those affected and their families. A causal relationship has been demonstrated between perceived illness uncertainty and negative psychological outcomes for individuals with progressive neurological illness. Whilst there is a small and promising intervention literature on the use of a range of individually focused strengths based psychological interventions there appears to be little guidance available how clinicians might help those family members of those affected.

OBJECTIVE: To undertake a systematic review of the evidence on the use of strengths based, family focused interventions that target illness uncertainty.

METHODS: A systematic literature search was undertaken using the National Library for Health abstract database.

RESULTS: Five papers were included in the review, only two of which were published in peer reviewed journals. All five reported on strengths based approaches that could be used with families but only two explicitly identified illness uncertainty as a target. Outcome measures were heterogeneous so data could not be aggregated for meta-analysis. The results suggested that these interventions showed promised but the review highlighted a number of methodological issues which mean that the results must be interpreted with caution.

CONCLUSIONS: There is very little evidence of the use of strengths based approaches to helping families manage the uncertainty associated with progressive neurological illness despite it having been identified as a key target for intervention. The review highlights the need for the development of an intervention framework to address this key clinical issue and suggests one model that might show promise.

7 thoughts on “ClinicSpeak: How much help do families need to cope with MS?”

  1. Prof G,Thanks for your post. Patient anger with their doctors is probably greater than you imagine. I was diagnosed 10 years ago aged 32. This was my first illness where I needed to see a specialist. The consultant's attitude left a lot to be desired. He though his job was done by reading out the MRI report and giving me some leaflets produced by the MS Society. I walked away knowing that I would be ill for life, would get worse, and would die younger that the average age. He didn't care. His job was done. 7 years of training and all. I got was a diagnosis and a pat on the back as I left the consulting room. Other consultants, who I guess are on the same payscales, get people better (oncologists, hear surgeons etc.). Unless you are diagnosed by a neuro, you can't really get a sense of how let down you feel. I was in the prime of life, paid my taxes, but when I needed help from the medical profession (is getting better really too high an expectation?) they let me down.

    1. I was diagnosed possible RRMS and the general neurologist, he didn't even mention DMT's. I was on a second very severe relapse at the time, he didn't even offer me steroids. He gave me some MS Society leaflets and sent me on my way. I'd had an MRI scan a month before that showed many MS lesions. I wish I had been seen by an MS neurologist. Unfortunately I was very naïve at the time. I feel very let down.

  2. You are wonderful. Posts like this make such a difference. I'm not usually an emotional person, but I had a tear in my eye at the end of teading it. Thank you. You get it. You're trying your best to help. Thank you.

  3. What about people who don't have any family, and have to go through all of the crappy stuff outlined above by Prof G on their own? Being in such a situation can be tougher in many ways – there may be no-one else affected by the "progressive neurological illness, but that's the problem – there is no-one else and consequently there is no support at all.

  4. Thank you for Prof. text G. You have set very well the stages through which we pass on to receive a diagnosis of a disease as difficult as MS, we and our family. Few are those who accept the disease itself from the beginning, even why the noun "disease" already indicates that "there's something wrong going on with you"…

  5. It is very easy to blame abstract things like “MS diagnosis” for anger. It is less easy to understand the impact a doctor has on patients. Stories of doctors turn patients and the powerlessness they feel are everywhere. Is my partner entitled to be angry at the oncologist who initially misdiagnosed her breast cancer as he thought it was a sweat gland and delayed tests because he was going on holidays? Is she entitled to be angry at the GP she saw for agonising pain and who sent her home with advice to take Panadol (the pain turned out to be a kidney stone)? Is she entitled to be angry at the doctor who performed her LP, used a too big needle, didn’t tell her to lie down afterwards and left her abruptly after finishing? Can she be angry at the hospital which left her without liquids coffee or pain relief when she presented at the hospital with post LP headache and vomiting? Is she entitled to be angry that it took the hospital 3 days to perform the spinal tap or whatever it was, while occupational therapists kept coming into her room to see how they could help her return to work (getting rid of the headache would have done wonders for her return to work)? Is she entitled to be angry at the doctor who told her, in response to advice that she was having her breast tested by her breast surgeon as there is a white growing cyst on it, “I hope HSCT hasn’t turned cancerous”. At which point is she entitled to be angry at the doctors treating her without being labelled “irrational” or going through stages of grief?Bojana

    1. Just been discharged from a hospital where doctors talk at you rather than listen. Doctors refusing to discuss your illness with you. Still quite shocked, they broke my spirit. Thankfully, my previous doctors were the most caring and excellent clinicians you could ever meet.

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