Thread by @HZiauddeen

Tweetpost:
No one: Hey Hisham, it’s been a long while since you did a tweetpost.
Me: Well I had one planned for World Mental Health Day 2019 but I got too busy and have just managed to finish it.
No one: Well let us have it.
Me: Well, if you insist… here come 50 tweets.

Long term mental illness and long term treatment
1.This is going to be about two major parts of the reality of living with mental illness namely:
(1) these are often long term/recurrent illnesses
(2) a significant proportion of people will require long term treatment/support.

2.These are often the focus of debates that often don’t include or really consider/help the people they are most relevant to. I don’t really think there is anything to debate about these points and being mindful of them is vital for humility, compassion, fairness and hope.

3. I do have several concerns about such debates but the biggest one is how not acknowledging these realities increases the risk of various forms of shaming (including pillshaming) i.e. you have not recovered because you have failed in some/many ways.

4. As always, I will try and respond to any replies and queries but I won’t be engaging in debates about these 2 key points in this thread. If neither is relevant to you as someone with lived experience and/or practitioner, great! But this is about other people then.

5. So first off, the matter of long term/chronic mental illness. A significant proportion of people with mental illness will have more than one episode of illness and not everyone makes a full recovery (i.e. no persisting symptoms/difficulties of any kind) in between episodes.

6. This is far more the norm rather than the exception. It is possible to have a much wider range of ideas about the nature, causation and treatment of a single episode of mental illness but this gets much narrower when it comes to a chronic/recurrent (esp familial) illness.

7. Often the term episode itself may not seem quite appropriate e.g. for someone with bipolar illness who goes from a 4-month manic spell to a year of depression, it can be difficult to think of nearly 1 ½ years of your life as an episode.

8. Or someone who developed OCD or an eating disorder in their teens and has struggled with their illness for the last 3 decades (it is common in such stories that people have lived with their difficulties and suffering for years before speaking about them or seeking help).

9.Or someone who developed schizophrenia in their early 20s and despite being on treatment pretty much continuously since then has never been symptom free.

10.The point is to particularly bear in mind the many people for whom ‘this is my life’ and ‘this is my mental illness’ aren’t really separable, either in the past (‘Over the years my illness has shaped who I have become and the life I have built’) or present or both.

11.For anyone with a chronic/long term illness it is always important to ask ‘what are the things you have had/have to do in your life because of your illness?’ i.e. over and above dealing with the ongoing illness. This can include:

12. a. Giving up or changing jobs/hobbies/lifestyles/relationships
b. The need for a fairly constant vigilance and self monitoring
c. The accommodation of fixed limitations (e.g. not being able to use public toilets, eat in public)
d. The time and opportunity cost

13. e. The loss of spontaneity
f. The increased cost of functioning (in addition to everything else I do I also need to devote cognitive and emotional energy to managing my illness- monitoring in the moment, planning for future moments)

14. g.Dealing with loss- of people, of interests, of one’s former self and abilities, of one’s aspirations.

These are true of many long term/chronic illnesses. However the unseen and poorly understood nature of mental illnesses means they are less likely to be recognised.

15.I highlight all the above because these are amongst the things you are trying to minimise/help people with in the present and/or protect them from (as much as is possible) in the future i.e. minimise/alleviate current and future suffering.

16.To be very clear, in point 15, I am talking more about one’s motivation and duty as a clinician. The work is done with the person suffering with the illness, with them doing the bulk of it.

17.This means that even in the first episode of illness, one has to help people recover from that episode and build/rebuild their lives in the form they want while doing the best to plan for the possibility of a recurrent/long term illness.

18.When it comes to the latter, the key aspects for me are getting people as well as possible, getting medication optimised, helping them get their lives back, education and understanding, compassion and self compassion and addressing self stigma.

19.Why am I banging on about this? Because this is the reality that many people live with in systems that either don’t understand or don’t accommodate this reality and are often frankly hostile to them, from the benefit system to employment structures.

20.It is also a big part of the stigma around mental illness. And it is vital to our conceptualisations of illness and recovery from illness, our theories about illness and the health care provisions we make for mental illness.

21.I am mindful that this horse I’m on is seriously f**king high.

22.Ok, on to the second point, longer-term treatment. I am going to focus on long-term medication here not because the non-medication elements (psychology, nursing, OT, STR) are not important, they ABSOLUTELY are.

23.However the need for them is generally more readily accepted and the stigma (both self and other) is usually not as bad as for medication. There is a major issue with the lack of availability of longer-term support in general given the chronic underfunding.

24.One can broadly think of the role of longer-term medication as serving 2 key functions (1) ongoing treatment of the illness (keeping symptoms at bay or under control) and (2) preventing worsening or future episodes. At times this can be a blurry distinction.

25.Someone with a bipolar disorder can be completely well on their current treatment and staying on it reduces their risk of future episodes of illness

26.On the other hand someone with OCD or schizophrenia can have their symptoms reduced to a far more manageable level by staying on treatment and this means that things don’t get worse and they are able to have a better quality of life.

27.It is always necessary to get medication right and optimised, even more so if you want to keep the option of longer-term treatment on a medication a viable option.

28.I usually go with: can you tolerate it enough to try it? Does it do enough to make taking it worthwhile? Is it tolerable enough to take long enough to get the maximum possible benefit?

(You can do the same with psychological treatments as well)

29.Early on in illness/medication trials, one aims for minimal/no side effects with enough benefit for complete recovery (bearing in mind that it is the illness that has the final say on this). As time progresses, the tolerability/risk-benefit analysis becomes more complex.

30.A not uncommon and frustrating situation is one in which the medication is necessary (things are much worse without it) but it only reduces but does not remove the symptoms, and this partial benefit comes with a significant cost of side effects.

31.A major part of longer-term treatment is working with people to try and get to the most balanced point possible with this (at different and often multiple points) and supporting them with changes including drug withdrawals.

32.There is a lot we still need to figure out about the biology of psychotropic medications (a big one being how to figure out which drug will work for a given individual) but with the regards to the current thread, here is one (hopefully) useful way to look at their effects.

33.Mental illnesses can be thought of as arising from brain networks that fall out of their normal optimal functioning. This can be caused by a whole host of factors from genetics to trauma. These perturbations can be self-correcting and we don’t often see these people.

34.Psychotropic drugs, act mainly on neuromodulators in the brain (serotonin, dopamine, noradrenaline, acetylcholine) and work by getting these networks back to optimal functioning. For some people doing this for long enough will ‘fix’ the network and treatment can be stopped.

35.PS: It would be reasonable to hypothesise that psychological treatments do something similar as well albeit by other mechanisms.

36.For others, without the drug on board, the network goes awry either very quickly (relapse) or over time (recurrence). Keeping the drug on board helps keep the network steady or at least stops it getting it worse.

37.Unfortunately the only real test of seeing which of these groups a person falls into is to stop treatment and see. Thus the importance of getting people as well as possible and helping them get to the best position possible.

38. The network explanation is a simplification but is informed by a lot of empirical work and I’d cite @sameerjauhar’s PET studies in particular here.

@sameerjauhar 39.One oft encountered argument I do want to address here is that people are put on medication (short or long term) because other therapies are not available. There is an element of truth here but like most issues, it is more complex than often made out to be.

40.When you have someone who is on a 10-month waiting list for therapy or other psychosocial interventions, you will certainly try to get them as well as you can using the other evidence based treatments you have available, including medication.

41.There are almost certainly several cases where people have not been offered or been able to access non-medication treatments that they were certainly eligible for. This is an error or failure in its own right i.e. not with respect to medication (more later).

42.However the argument from pt 39 is often based in a therapy vs medication view which can range from medication only after therapy has been unsuccessful, to therapy is the real treatment, medication is just a sticking plaster/takes the edge off, to medication is evil/toxic.

43.Btw, I have referred to ‘therapy’ above because that is often how the view is formulated. In reality there is therapy, medication and a whole range of psychosocial interventions and the idea of one versus the other(s) is a very odd one.

44.Because when you are trying to help someone with their suffering and to get their life back, you will try any evidence based treatment you can offer in the best possible combination in time.

45.And monitoring and continually trying to improve things for them is what longer-term care is about. This is increasingly difficult to do in the face of funding pressures which have moved us increasingly towards a treat-the-current-problem-and-discharge provision.

46.In my first tweetpost (pinned tweet if you want to waste any more of your life), I listed various failings of psychiatry and the mental health services. All of these still hold.

47. However given how polarised these conversations get, I think we need to think of failures in terms of the full complexities of their causation i.e. how much is this is a practitioner problem, a field/model problem, a service problem and what is the complexity of the context?

48.This is vital as only this will get us really closer to understanding and addressing these failings and helping the people affected by them. Simplistic ‘the problem is X!’ explanations don’t help.

49.Given the recent conversations I have been involved in on Twitter, I am not sure how this will go down but please remember you can always mute or block me. I will do my best to try and respond to queries.

50.Wishing you all the best for the New Year!
End