Viewing 7 posts - 1 through 7 (of 7 total)
  • #164149
    Mental health matters

    Hi all

    There’s been a lot in the news this week about mental health support, and we launched our APPG report this week into mental health support for people with muscle-wasting conditions.

    You can read the news story here https://www.musculardystrophyuk.org/news/news/new-report-on-gaps-in-mental-health-services-launched-in-parliament/
    Some of you may have given evidence, some of you may not even be aware of our campaign. What more do you think could be done to provide mental health support for you? Does that support change from point of diagnosis to further down the line?

    I’m interested to hear your thoughts. Personally, I think mental health support across the board is severely lacking, underfunded, way too long waiting lists and still not taken as seriously as it should be.

    Emma

    Online Manager, MDUK
    Looking to get more involved with the MD community

    Emma Smith-Bodie Emma Smith-Bodie
    Participant
    Posts: 0
    Joined: 30/07/2018
    #164283
    Reply To: Mental health matters

    A very interesting topic and one with many facets. I can, of course, only speak for myself, but I suspect i am not alone when I say that the MD has caused me some bouts of depression, sometimes quite serious ones. I suspect I am not alone and many others have also experienced the same. However, what can be done about the situation generally is more a postcode lottery in my belief. I have struggled from the start to get the right help and support from the GP practice as mostly they do not have a clue what to do, about MD . But there is no joined up approach to dealing with MD in the first place, and I believe that is what is needed to combat the mental health issues as well. It does not take too much vision to see that those of us who were able bodied, for example, and no longer are, may well be affected by mental health issues. Those who were born with MD problems will also no doubt have mental health issues from the extra problems they face throughout their life, in part brought on by the environment that all MD patients have to deal with. the stresses and strains of dealing not just with their condition but also with the antipathy (at least for me) that is seen at every turn when dealing with the various organisations involved in our lives.
    Generally, I agree that there is far too little funding available generally, let alone for those of us with MD. But before funding is allocated the size of the problem needs to be known. Many will not want to come forward and say they are or have been depressed as a result of MD, they need to be encouraged to do so, if only anonymously. An online survey would be a beginning. Publicising real case histories is another step, but also, and perhaps the most difficult, is advertising the fact that MD does exist, and how it affects those who have it. This must be addressed to decision makers including GPs, social workers, consultants, nursing staff, and many other including the Secretary of State for health. But I wold also put in a mention for our carers, who come in many forms, and often take the brunt of our mental health problems along with all their other responsibilities. Perhaps someone might ask them how they are affected by it.
    One final note about my treatment. I sought help from my GP who prescribed some medication. It was in capsule form, and thus, as a vegetarian, I could not use it. I was advised to open it up and swallow the contents. Needless to say it proved a disaster and I was left to deal with my problems myself, again!

    Mike

    SO many love songs, so little love.

    embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #164365
    Reply To: Mental health matters

    You’re right that it’s certainly a postcode lottery as to what’s available through your GP for mental health support. Just the other week they had victims of the Manchester bombing calling for better mental health resource because they had struggled to get access to it, and that was a much publicised tragedy. Even with awareness of what MD is mental health resources would still be limited, but at least there would be an understanding of the need.

    Sorry you had such a hard time. Without MD but with mental health issues, I’ve had good support through my GP but waiting times in the past have been incredibly long. Fancy telling you to open up the capsule and swallow the contents! Yuk!

    Online Manager, MDUK
    Looking to get more involved with the MD community

    Emma Smith-Bodie Emma Smith-Bodie
    Participant
    Posts: 0
    Joined: 30/07/2018
    #164372
    Reply To: Mental health matters

    I notice that even in today’s postings there are tales of folk with mental health issues, and that is without asking. Really does support the need to ask t find the scale of the problem. Personally I believe it will be quite extensive in the MD community.

    Mike

    SO many love songs, so little love.

    embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #164398
    Reply To: Mental health matters

    It is an area that has been lacking with regard to support. I remember hearing my paediatric consultant deliver a speech a few years ago and he highlighted how he and his colleagues are constantly frustrated and lobbying for finances to allow them to support patients and their families with the emotional aspects of MD.

    I took part in a research project a few years ago through Kings College. I was heartened that mental health was being discussed within the MD community. I hope this continues. I must have a look at whether this research has been published yet.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #164485
    Reply To: Mental health matters

    Yes it would be interesting to see if that research has been published – if you find it do share. The subject of mental health is slowly becoming less taboo, at least to talk about judging from the news. But if you add a complex condition that’s barely understood such as MD, then things get more difficult. Understanding symptoms of mental illness is important, and it’s really important that people like GPs can understand the affect of an MD diagnosis or living with the condition can have on a person.

    Online Manager, MDUK
    Looking to get more involved with the MD community

    Emma Smith-Bodie Emma Smith-Bodie
    Participant
    Posts: 0
    Joined: 30/07/2018
    #164592
    Reply To: Mental health matters

    May I add a further thought from my clinical days? I notice that amongst my colleagues, and professionals from other areas, there was always a great reluctance to accept that a patient may have more than one condition present. This often meant that treatment of say, diabetes, would often continue as “we need to sort this out first”. Mental health was very much taboo in my day and often ignored as being someone who “needs to pull themselves together”. Another factor I also found was that often, medical professionals, of whatever variety , were, and indeed still are, often so busy as to not have the time to listen to the full story of a patient’s problems. Can you effectively look at a person’s life in what may be a ten minute appointment, running late and still with paperwork included? In my area I was fortunate to be able to schedule more time with patients and I and they found this tremendously beneficial, as, at long last, there was someone who had taken the time to listen and understand their difficulties. that, in itself was a step forward for many.
    Perhaps we may never have the opportunity again to be able to offer the most important part of someone’s mental health treatment, the time to listen. We must at least commit to begin the process for those who have MD.

    Mike

    SO many love songs, so little love.

    embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
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