Sunday, 13 May 2018

Care Home vs. Independence

A commentator brought this BBC interview to our attention as an example of what is happening to people with MS living in England. I would be interested to know if there are any other examples of this happening across the country. We need to do something about it. Can anyone help? 


ProfG    

23 comments:

  1. Edith is so young yet so disabled by MS. In this 'new' era of 'miraculous' DMTs, it goes to show that progression still is happening.

    This makes me believe that what this blog advocates in terms of early, aggressive treatment is smoke and mirrors. There is no real cure. MS is evil and of the devil.

    Edith's plight is a shameful reflection on Britain. Society failed her, neurologists failed her, her family failed her.

    My ex-wife is Asian and has MS. As her disability progressed, she moved in with her family. They didn't want it any other way. Asians put family first. Us white Britons need to look at how well they do it. Even though we're divorced, she remains my hero.

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  2. The care sector only staggers along as well as it does with the help of masses of excellent staff from mainland Europe. The Brexit effect on care sector staffing levels doesn't even bear thinking about. We think it's bad now, but we have worse to come, I'm afraid.

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  3. Southern European countries provide less social care & support. But these countries usually have much stronger family bonds than the UK, as a result families are the ones that take on the care of pwMS, especially if their disease is advanced.
    May not be ideal, but it often works.

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    1. Same with African and Asian, they have stronger family bonds and take care of their families.

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  4. It's happening because there is not enough money in social care to pay carers a decent wage. The 'help' we can offer is to vote the current government OUT and have a socialist government who will fund social care properly. What has happened to this young woman is dreadful. Fund social care! Increase benefits!

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  5. Tragic, I teared up watching it. Pitiful, I am ashamed to be British.

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  6. This is an example of how disconnected neurologists are from the reality of their patient's lives. We have no control over social services. All we can do it write medical reports in support of our patients' needs. However, it is becoming increasingly obvious that we need to do more.

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    1. The more you can do is to persuade a patient of the risks of not taking a highly effective treatment. Cambridge have emerging data on the outcomes of those who have received Alemtuzumab. Neuros should not be standing by as patients go for the safe but fairly effective treatment option. Start treating MS like cancer. It needs to be put into remission, not left to fester until the damage has gone to far and the patient is in a wheelchair facing an early death preceded by an undignified duration in a care home.

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    2. I have an idea who is involved in her care, but have no idea what treatment she is on. What I can say is that under current NHS England guidelines she should have had her DMT stopped. People in wheelchairs are not eligible for DMTs under the NHS. The latter is one of the reason why we want to do a controlled withdrawal study to see if patients with more advanced MS still benefit from their treatment.

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    3. Prof G, this woman in the video is moderately young and was diagnosed in the mid-naughties when she was a kid. There is no way her neurologist didn't administer her DMTs, but here she is, disabled and getting worse. This to me demonstrates that despite the efficacy of new drugs, MSers - even young MSers - will become disabled despite these DMTs. Be honest Prof G, do you still have young adults in your care that have succumbed to progressive MS despite being on new DMTs?

      Edith has little in the way of hope. There is nothing that will stop her progression. Neurologists should be ashamed. Government ought to be embarrassed.

      Also, I'd like to say families in the West should be more active in contributing to care of ill people. We often have more than one child in life so that siblings can look out for each other when we pass on. We've lost or values - it's me, myself and I nowadays. Shameful.

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    4. Anon 3.34 there were only interferons and glatiramer in UK 2004. Anyway we don't know what happened so really can't comment.

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    5. Annonie Mouse, Edith got progression only 5 years ago.

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  7. I agree. What MS Centre looks after her? They surely could help?

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  8. I was diagnosed at the same time as the lady in the film - she was 16 and I was 36. I got on a trial for Alemtuzumab and at 48 my MS is in remission (NEDA) and I work full time / enjoy my life with my husband and 3 teenage children. This young lady has been let down by the medical profession and someone should be brought to account. A real scandal and I fear that there are others with this vile disease who are not receiving the best treatment available. I also agree with some of the other points raised above about family. We tend to blame social services, austerity etc etc but in the past family / extended family cared for their loved ones. I know it's not always possible, but we need to get back some of the duties that we have lost in the modern era.

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    1. Worrying isn't it? Listening to this lady describe her early symptoms I had a horrible sense of deja vous from my diagnosis at around that time (age 35).
      Neurologists, in my experience, barely believe sensory symptoms and if you can get taken seriously enough to have an MRI and diagnosis you're doing well.
      It's almost a case of being 'lucky' if you get something with clinical signs and visibly disabling. Otherwise you're told your symptoms are mild and not worth treating. Or treatment started then stopped.
      And these days even, people have to jump through hoops and tick boxes to qualify for the best treatments.

      Ps pleased to hear about your early alemtuzumab, great result :)



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  9. This is outrageous and we pride ourselves on being a socialist democracy. A scandal.

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  10. Seeing this video, and seeing how youngish Edith is makes me question the DMT hype-machine. Something has gone really wrong here.

    So sad. I fear Edith will struggle in life and society will not pull its weight. Sack all neurologists, they're rubbish.

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    1. Eh? "Sack all neurologists as they're rubbish". Well, mine isn't rubbish, in fact, he is inspirational, keeps me motivated and helps provide excellent information on what medicines can do, and what I can do myself, to improve my life with PPMS. Until there is a cure for all forms of MS, its neurologists who are making the "stepwise" breakthroughs towards knowing more about the disease, trying to stop progression, and investigating ways to re-mylinate (or whatever the technical term is). PwMS need optimism and your post is not helpful at all. Who is supporting Neuros against anonymous hostility like this? Not enough readers, that's for sure.

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  11. From watching the 10 minute clip it doesn't appear to me to be quite as black and white as the post suggested.

    The agency providing the carers for this young woman said she was their only client in that small town and it was no longer viable for them. The council has offered her the option of direct payment (she receives money from Adult Social Services and then recruits her own carers) or a care home place. She said she didn't want family caring for her as it "blurs the boundaries".

    Even if council-organised social care was better funded it is unlikely to be able to deliver the personalised (times of day, number of visits, range of tasks etc) that each individual would like.

    There is a recruitment problem in social care that will probably worsen further as the UK leaves the EU. My daughter worked as a carer one summer while she was home from university. She received three days office-based training and then was given a quota of clients. There was no handover or shadowing, just a list of names, addresses and the time she had to be at each one. She had to learn about each client's needs from their file, held at home, during her first visit - when she also had to get them up / washed / dressed or whatever in the allotted time. Her morning shift started at 6am and the evening ones finished at midnight. She didn't get paid for the journey between clients, which took around 2 hours on top of the 8-10 hour shift. Many clients were unhappy with yet another new carer (because of the high turnover of staff) and told my daughter so. She treated her clients with the same care, respect and diligence as she would have wanted for her grandparents but didn't feel valued. She felt her personal safety was at risk with a couple of clients but the agency offered her no advice.

    So in a variety of ways there was little job satisfaction. She stuck at it for the three months of her summer break but said she would not work as a carer again.

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    1. Anon 4.48 well said and you're right re no training from agencies (have a friend who does a few hours of care work). I know the unpaid travel time is a big problem.
      A friend with MS has direct payment option and that seems to work well. Hopefully Edith will be able to do that now with BBC publicity :)

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    2. It would seem the better option remaining might be that the lady recruits her own carer/personal assistant and pays by the direct payments.

      The Money Advice Service website mentions going through a recruitment agency for this but there may be a charge for finding someone. But it might be worth it for the added peace of mind.

      https://www.moneyadviceservice.org.uk/en/articles/using-a-personal-assistant-to-provide-your-care#using-a-carer-or-personal-assistant-to-manage-your-direct-payments

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  12. Edith is an amazing woman, carrying on with life, working full time and living independently, despite the debilitating symptoms of MS. I sincerely hope she can find carers to give her the help she so deserves.

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  13. My sound is a bit dodgy on the works computer, is the problem not funding but finding a agency to take on the work ?

    Vicky has been promised extra care hours since the start of the year, basically CHC have told the District Nurses she can have whatever she needs.
    Currently Vicky receives 46.5hrs care package which allows me to get into work Monday through Wednesday, we had a meeting re the new care hours and when the new package was totaled this came in at 92 hrs, basically double what she has now and this didn't phase anyone.

    The problem doesn't seem to be funding, well not in our case it is finding a agency to take on the work, granted Vicky now needs to have some qualified Nurse hours as well as basic carers, but this is where the hold up is.

    'You pay peanuts, you get monkeys' so maybe it is funding ? people aren't going to be falling over themselves for minimum wage and zero hours contracts.

    Regards as always

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