The MS Society Christmas Concert at St Paul’s Cathedral last night was very slick and uplifting. The concert is part of their ambitious Stop-MS campaign to raise £100M over 10 years for MS Research.
The concert was layered around several Christmas stories written by Abi Morgan about people living with MS. Abi is a very successful play and screen writer. All the stories were read by professional actors, who were stunningly good at bring out the emotion in each story. My only complaint is that the stories were slightly sugar coated, or may be marzipan-coated a more appropriate term for Christmas. Dare I say the stories represented a ‘rose-tinted’ view of what Christmas is like for people living with MS.
I am currently on day 3 of a teaching course we run to teach people about MS. Yesterday, Dr Clarence Liu, our neurorehabilitation expert, was unable to give his talk, which I delivered on his behalf. One of the cases of his I presented represents the under-belly of MS; neglected MS.
Case Study:
- 61 year-old man
- 25 years of progressive MS
- Bed bound. Doubly incontinent, 2x chest infections & 3x urine infections last year
- Lives alone in 2-storey house, regular visits from children & ex-wife
- Adamant he wants to remain in his house
- Cachectic, deep sacral pressure sore
- Cognitively impaired
- Dysarthric & dysphagic
- Severe contractures in limbs with spasticity
- Complaining of discomfort in bed
- Unable to stand
- Dependant on others for all activities of daily living
- No leisure activities
- Lives in the front room of his house “micro-environment”
I wonder what kind of Christmas this gentleman is going to have? May be I am wrong in forcing you to think about people with neglected MS this Christmas?
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Interestingly, I read a deeply moving account of a neglected patient with breast cancer in this week’s NEJM. You can easily do a search and replace substituting ‘breast cancer’ with ‘multiple sclerosis’ and the messages will be the same. How do we as a society lift ourselves up and not forget the neglected people with disease? How do we improve our health and social services to make sure these people are found and looked after better?
Jennifer Lycette. Neglected — Cancer Care and Mental Health in Rural America. N Engl J Med 2016; 375:2220-2221.
Excerpts:
…. My first thought, as I viewed the CT images, was a somewhat fantastic notion that the tumor on the monitor screen could not possibly be real. It obliterated not just the area where the breast should have been but most of the chest wall….
….. Even in the United States, such a presentation is a common enough occurrence that any first-year oncology fellow can tell you its name: “neglected breast cancer,” a name that implies that the woman has neglected to take proper action to treat the cancer.
….. The minute I walked through the patient’s door, I knew: the pressured speech and tangential associations of bipolar disorder hit me with concussive force….
…… One of these melodies was familiar: at first, the patient had not believed it could be cancer, although she’d acknowledged the possibility. She’d had a plan to use various alternative therapies and to eventually have a biopsy if they hadn’t worked; she thought the fact that the therapies weren’t working meant that it must actually be an infection……
…… A second melody told the story of the terror she’d experienced as a very young child witnessing a relative’s cancer treatment and its effects, including hair loss. She feared having similar treatments forced on her. Her appearance was important to her. I noticed that despite being in the hospital, she had taken the time to apply makeup. She wore bright red lipstick, but the color spilled over the edges of her lips, as if a child had colored outside the lines. I later realized she must have had to apply it with her nondominant left hand — she’d lost the function of her right arm because the tumor had destroyed the brachial plexus…..
…… Her family had their own refrain to share, describing a loving mother and a vibrant member of the community. Her grown children were now raising young children of their own. Only in recent years had they started observing unusual behaviors. Eventually, out of love and concern, they’d had her involuntarily committed for a psychiatric evaluation. She’d felt betrayed by her family, and they continued to feel horrible guilt over that decision. She had read extensively about patients’ rights so that she would never again be hospitalized against her will…..
….. She continued to refuse to allow any health care or hospice staff into her home. I prescribed comfort medications, but she would rarely let her family administer them. When the exhausted family could cope no longer, out of desperation they brought her to the hospital. When I went to see her, she was sleeping comfortably, having finally accepted pain medication. I felt undeserving of the hugs her family gave me. She died peacefully 2 days later……
….. Her death left me with feelings of profound failure. What good were targeted therapies when her coexisting mental illness prevented her from taking them? And I had been unable to palliate her suffering until her very last days of life. Oncologists don’t just prescribe chemotherapy — a large part of our practice involves caring for people at the end of life. I could not provide that care because I lacked the tools and training to overcome the barrier of mental illness…..
…. Before my patient died, her family had told me that they hadn’t found out about the tumor in her breast until they asked one day about the strange bulge beneath her shirt. They hadn’t realized how advanced her disease was until the day I first met her in the hospital. They asked me what the outcome would have been if she had not hidden it from them and had sought care earlier…
….. I was tempted to answer this question academically, telling them about success rates of the latest neoadjuvant four-drug combination regimens, outlining a typical course of neoadjuvant chemotherapy, surgery, adjuvant radiation therapy, and 1 year of adjuvant trastuzumab. But I imagined the patient coming to me in a fictional past at an earlier stage of disease. Without treatment of her mental illness, she would have been extremely unlikely to agree to, let alone complete, such a course of therapy. She might have had surgery if she had presented when the cancer was at an operable stage, but she might not have agreed to that either. And regardless, without a full course of adjuvant therapy for the high-risk, HER2-positive, ER-negative tumor, within months to years she would inevitably have had metastatic disease…..
….. So instead, I found myself gently answering, “The same. I think it would have been the same.”……
…… The family nodded in agreement, saying that’s what they thought, too — that in the end, the cancer was but the saddest final chapter in the devastating story of untreated mental illness, the true neglect……
Prof G you are spot on. The MS Society has always had, and always will, have a rose-tinted view of the world. They also dumb things down far too much and treat us like children. I sincerely hope they start spending the money more wisely; as far as charities go they spend far to much on administration and propping-up the NHS and social care. Do you know if all of the £100M will go to research or will most of it be spent on salaries?
I agree – based on my experiences as a partner of a person with MS, in a different country, on a different continent. It galls me to no end, also, that the MS society takes direction and advice from the MS research society, which is owned and run by neuros.
Volunteers at our local MS Society branch work really hard fundraising, running exercise classes and social events but I have to say that in the UK the much smaller MS Trust provide better quality information with a fantastic website and publications (would never have found this blog were it not for the MS Trust!). The MS Society seem top heavy with executives and their accounts are very vague as to overheads and amounts given as research grants. Love and respect my hard-working friends at the local branch very much but when it comes to my £ I feel the MS Trust (or giving directly to research like the crowdfunding here) is money better spent. It's a personal decision, but I do not intend hanging around long enough to be the man in your sad story Prof G. Please, please keep up all the amazing research, pressure on Pharma and of course this wonderful blog 🙂
I agree with you; the MS Society uses far too much money on keeping itself going. This why funding research projects via crowd funding appeals to me. Prof G when are you going to start the next phase of the Charcot project? I would be willing to donate to it.
I've been indoors for 3 weeks because of a bad exacerbation. But I have a loving husband and son caring for me. I can walk somewhat, not drive yet. There are so many others who aren't as blessed as me, who need our love and care and, of course, money to help toward that. Thank you for writing this on their behalf, Prof. G. After living with MS for 30 years I've learned one thing: speak the truth. Breaking ourselves open to teach others and speak out is the only way to create awareness and make things happen.
"How do we improve our health and social services to make sure these people are found and looked after better?" The social and psychological aspects of MS need attention. I think the idea of peer support in MS is worth looking into. This is what's happening in other areas of healthcare such as mental health, as with the recovery college model. There could be apprenticeships for peer support workers.
My aunt was bedridden with MS by 50, and could only move her head by 55. She lived like that until she was 83. She didn't want to die though, she loved seeing her family and watching old films. I would love her strength and will.
Any idea how much the Society raised last night?
My grandmother died from breast cancer in 2012 because she was too embarrassed to tell anyone. The doctors, who were limited in what they could after she presented to them finally, were very kind and caring, to both her and my dad.Before my partner was formally diagnosed with breast cancer, her oncologist had told her that it was a sweat gland (atypical presentation and she was too young). When it became evident that it was cancer, his guilt and quick action were equally obvious and saved her life (the aggressive cancer hadn't spread during the delay and from the date on diagnosis, she was operated on in the public system literally the next day).I can't imagine what life would have been like if the end to that story was like my grandmother's. We are all shaped by our experiences. I agree, let's not forget humanity as we sing. Try and find some time away from MS too, for the good of yourself and MS.
Does the case of the 61 year old man not illustrate the awful and inevitable consequences of MS for some people rather than neglect? Apart from perhaps better nursing care to avoid pressure sores and physiotherapy to help with contractures, what else could have been done for this chap?I really hope he has a comfortable Christmas at home with his family around him.
As a person who is natural and lives in a third world country I wonder every day how I can help my neighbor, how can I make society the environment in which I live better? It is extremely disconcerting to often feel powerless in the face of so many difficult situations, but the important thing is to initiate change even if it is for small attitudes, until society fully awakens, has more sense of collectivity …
Pre ms diagnosis, and following a previous incorrect stroke diagnosis, I had a bad relapse whilst in bed with flu affecting entire left side, bladder control, balance, cognitive and it seems, an unreasonable list of other issues. I couldn't get out of bed or go to the bathroom without my husband holding me up and taking my weight. I kept choking on food and developed frightening breathing difficulties.My husband has his own issues, my research tells me one of those is poor executive function. When I told him I couldn't move the left side of my body he asked me if I wanted a doctor. I couldn't tell at the time but my ability to think or make decisions was very badly damaged and I said no, I don't need a doctor, so there was no doctor.Given the state I was in he should have dialled 999 immediately but he was unable to because, I believe, of his executive functioning difficulties.It was around 3 weeks later that I got myself to a rather shocked GP. I felt embarrassed and stupid describing what had happened after so long. She, very reasonably, thought I had had a stroke and phoned the hospital. It was diagnosed as a stroke, though this turned out to be incorrect.The damage in my brain had completely shattered my ability to think in a useful or sensible way and was no one else in the house was capable of making important decisions on my behalf. Sometimes we are not able to what we need to do.(I am writing this anonymously for my husband's privacy.)