Am I becoming a serial complainer?

09 February 2009 | 06:06 PM
Laura
Topics: Siblings, Health professionals, Services

I just thought that I would share something about my experience of having a brother with serious mental illness. I am not sure his exact label but we have three to pick from Schizophrenia, Bipolar disorder or Schizoaffective disorder.  I don’t really care I only know how it affects his life, mine and the rest of my family. 

I was really pleased to find this site and I am surprised there are not more blogs on it.  I am hoping that blogging on here might help me get a few things off my chest and lesson the burden on my partner, who has to listen to me almost everyday talk about my brother, especially at the moment as he is hospital under a section.  I also hope to hear from other siblings – tell me you sometimes feel the same way, tell me I doing the right things, tell me your experience, tell me what you think, be critical if you need to be but please do talk to me!

I have tried many times to write about this and I ways struggle and ultimately fail.  I never know where to start, it always feels like there is just too much detail, it feels like I can never get it all down in words.  So I will just tell you that I am 37, my brother is 48 and his difficulties with his mental health all started 24 years ago. I am sure, as I do more blogs, I can go into some of my experiences over the years but if I try to start that now I know I will fail again to get it down,  So I will start with what is happening now.  This will probably give me enough to write about anyway.

I will start by telling you that, in case I forget later, that I love my brother very much, I think he is funny, kind, brave and loving.  At the moment however it is really hard to recognise him.  He is very psychotic and he hates me very much.  But what I want to share with you today is my worry that at too early an age I am becoming a serial complainer!!  Oh I don’t mean to those close to me, oh woe is me and all that, I mean a serial formal complainer.  I have just send off yet another letter of complaint to the NHS Trust in charge of the inpatient unit where my brother is admitted.  Although he is on a section, the ward that he is on is an open ward, and goodness me what an apt name!  He has been on a section there 6 times in the last 7 years and every time it is the same story.  I suppose they are consistent. 

Although he is so unwell that they felt that he needed to be sectioned, it seems that the ward is unable to prevent him leaving the ward whenever he gets the notion to.  So far this week that has been every evening around 6 pm.  He walks out of the fire door, the alarm goes off, they ask him to come back, he says he will not.  They say he must.  He walks on until he gets about 10 meters.  He is now off hospital grounds, so the staff can no longer do anything!  He continues on his journey, first night in his dressing gown, last night just in a shirt, the staff go back to the ward, they call my mom to let her know (which believe me is a huge improvement!) and then they call the police to let them know.   And so there we have it – is it just me or is this insane!!!  

As you can imagine we all then have a wonderful next few hours, telephoning relatives who live close, just to make them aware that he might turn up there.  Then worrying about what might happen to him, will he just get drunk, will he turn up somewhere demanding money, will he get hurt – will he freeze in just his shirt!!  You can’t help the way you mind works in these situations.  I talk to mom, I tell her not to worry, I say he always turns up, he’ll be OK, she calms down, says she will try to stop thinking of all the things that might happen.  Then what, I who was calm and being optimistic well I get off the phone and I start doing all the gloomy thinking for us!!

As well as these regular escapes, he also seems to be able to get cannabis fairly easily on the ward, which again really is not helping his state of mind.  So although my brother has been in the hospital for nearly a month now, he is actually getting worse.  It was the same last time, 2 years ago, and it ended with him spending a year in a secure unit over 100 miles from home!  And so it starts again, only this time the care team have decided much more quickly that they are unable to provide the correct environment for him to get well and they are applying for funding for him to go somewhere else.  

Anyway back to my point.  This morning I read the usual spiel on this hospital’s website which included the sentence: “All in patient wards ensure that individuals, irrespective of age, receive their care/treatment in the most appropriate care environment to meet their needs”.  Well the next thing I know I have spurted out a letter of complaint and have pressed the send button.

So to my shame I’ve done it again.  Yet again I have with free will entered the Kafkaesque world of the NHS Complaints System.    Am I the only one who still does this?

Comments

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1. At 07:06 AM on 09 August 2011 Maggie wrote:

Discomfort Trying to Adovcate for each Other

I am in the USA and do not know what 'sections' are, but I have heard some stories which go both ways. It sometimes may appear 'the systemic horror mask' repeatedly saying--we do no harm...in a trance state...only to find the medical documents and brain MRI's read entirely different from any words of either the MDs or the patients and their peers. But regardless, thank you for caring as best you knew how for your brother. The indivdual is generally considered an individual who is living with a disability, for example, a neurological conflict like epilepsy or something where the individual must try to learn how to manage living outside of the institutions. Hobbies, yoga, meditation, prayer support groups, peer advocacy, peer mentoring help the individual reorganize this new way of learning. As we age we sometimes have to use other medications because we develop too many side effects. It is as though part of our mind is out guessing the doctors--without our own awareness--hence meditation, yoga, prayer, journaling, cooking, networking to try to stay connected to our own neighborhoods and everyday living. Coalitions groups can sometimes help families encorage the disabled to be active in independent living skills. Hoobies help with getting through the long periods of not having a spouse or not being employed. Disability is still difficult at any age and some people live on only to find the disability was something different from what was originally suspected. The important piece is trying to keep participating in the living world as positively as possible. Wish you well.
2. At 03:25 AM on 09 August 2011 Maggie wrote:

Learning the ropes of Disability

First, I am sorry your brother is sick and not responding well to treatment. Second, I'm in the USA and am not too clear what a section is, but I have an idea. Thank you for caring about your brother. I have heard about experiences where there is slander and unexplained isolation rooms and very unfair use of ECT's when the individual is not suicidal--but the records said the family said so and the family did not. So, it is good you care very much what is happening. Slander in medical records can be very damaging to a person who is trying to recover. Peer Advocacy and mentoring may also help him--if the networks are willing to go to his home or to visit him in the hospital. Any disability is hard for a person to learn to become as independent as possible. Are there coalitions or networks for him to meet with that do not try to define his disability? Prayer, meditation, and yoga are also helpful--and a great escape from the routine hosptial schedule--can you or friends visit to do yoga, meditation, or prayer with him? I wish you well! Maggie in USA.
3. At 06:52 PM on 29 September 2009 Ann wrote:

being strong in your support

Laura, I think your brother is extremely fortunate to have you fighting for him and I urge you to continue doing that. I would say the same to others of you who have replied to Laura's email. My sister has been relatively well and free of "episodes" for a number of years now, though does still have low periods where we worry 24/7 about her. We are extremely lucky, I know, but as you will all appreciate, it still lurks, we still wait, knowing she could be taken ill again at any time. I have not been as strong as you seem to be, I have not fought for her in the ways that you all have. My excuse is I live a long way from her and so can't see what is going on. And at the times she probably needed our help most, she has always kept us at a distance and refused to let us in on what is going on for her. It is hard and frustrates me. So keep fighting for your brother, be proud to be a 'serial complainer'. After too many years of sitting back watching my sister I have now had enough and am about to join your ranks. Her current situation is difficult and we worry it is going to tip her over the edge again if I don't! Just doing my research first, then the first of my letters is going to fly!!
4. At 11:23 AM on 27 July 2009 Vee wrote:

sibling care

I have just discovered these blogs and after many years of caring, I find them a great comfort. I think it would be helpful for siblings to share ideas about what can help; for example, which particular medications or therapies their siblings have found to be effective. Most of us will not have any medical qualifications and siblings will not have the same diagnoses (for what these are worth), but we are uniquely placed to recognise whether medication helps or not. In my own sibling's case I have found changes of medication to be very disruptive to his mental health and sometimes I have no idea why medication has been changed when he has been stable. There is also an increasing tendency to criminalise the mentally ill as there are so few hospital places, and we siblings must fight this. Anyone care to comment?
5. At 10:51 PM on 09 July 2009 Speedy wrote:

I am so sorry

I am so sorry for what you have gone through - how unbeliveably awful. I am new to all of this and have already become a 'serial complainer' - I just cannot give into the system and stop complaining. I refuse to accept the unacceptable. Never stop fighting for your loved one and don't give up. You may find it amazing but I have found that writing to my MP helped. An MP's letter goes straight to senior management at the hospital.
6. At 10:49 PM on 09 July 2009 Speedy wrote:

I am so sorry

I am so sorry for what you have gone through - how unbeliveably awful. I am new to all of this and have already become a 'serial complainer' - I just cannot give into the system and stop complaining. I refuse to accept the unacceptable. Never stop fighting for your loved one and don't give up. You may find it amazing but I have found that writing to my MP helped. An MP's letter goes straight to senior management at the hospital.
7. At 10:02 PM on 08 May 2009 michele cross wrote:

Laura's brother and others

I am a member of Rethink and just found this page as I have it linked to my Facebook. I have a schzophrenic mother who has been unwell since I was a small girl. Dragged off literally by 5 policeman when I was about 14 I can barely even type it. Taken to the local mental health unit where she came home two days later and was never seen by any mental health professional until she was sectioned 25 years later. You would think that things would have improved since the 70's but alas no. My brother a special and extraordinary boy lay down in front of a train two weeks after going into hospital asking for help. Prior to that I'd pleaded for help but no one would listen to me. Nothing changes,my mother is currently on the ward I am aware of the duty of care but it truly is not being met.Nothing changes and I cannot see it ever will.
8. At 04:27 PM on 23 April 2009 Christine Peace wrote:

Is it me, obviously not

I read with interest peoples comments on the NHS's treatment to mental health patients. I am the mother of a so called"schizophrenic" daughter. All the comments about treatment on wards, the availability of cannabis etc is a joke! The psychiatrists want to know all the information from you but will give you nothing back in return. I am totally frustrated with the service provided and will be pursuing a complaint with our authority. You are left feeling completely isolated and wonder what happens to those people who have no family behind them. Keep writing and complaining to get done what should be done.
9. At 12:23 AM on 17 April 2009 chris wrote:

Hello Laura

Hello laura, I Just to write to you with some facts and advice. Firstly. If you brothers illness/symtoms then care team which are responcilble for him must consider moving him to a Mental Health High Dependcy Unit, Which is more secure where he will not be able to escape. There is also a higher level of nursing and the obsvations on patients are more often. He will be always monitered always. As for the current ward he is on. The Care staff have a duty of care for him. As he is a mental health patient he is vaunrable. They have a duty to stop him leaving the ward and restraining him if nessery. They can't say that he is no longer thier responciblty just because he has left the grounds of the hospital. If he has managed to escpae then they have to follow missing patient procedure, which is firslty to call the police and inform them that a mentla health pateint has escaped and is vaunrable. The police will then find him and bring him back to the hospital and request he be moved to a more secure enviroment The hospital must also inform the next of kin of the situation and tell them of the action taken. If you are genrally not happy with the care recived by hospital care team then you have to power to complain to the trsut, local mp and also take legal action. I am disgusted with the care your brother has recived. You also have to right to request your brother get moved to another hopsital all together.
10. At 11:13 PM on 01 April 2009 Mary wrote:

complaining

Hi Laura, thanks for blogging about your situation - my brother has schizophrenia as well so although all situations are different, I understand some of what you're feeling and going through. Have you formally complained via the hospital's PALS service and have they said whether or not they have a secure ward as another option if you think that would be right for your brother? Also the service the hospital provides will be commissioned by the Primary Care Trust that your brother "belongs to" via the GP he is registered with. Commissioners at the PCT hold the budget, so if you are getting no joy with complaining to the hospital, contact the PALS service for his PCT and complain again with copies of the complaints to the hospital's PALS service. If you've talked directly to the service manager for the ward your brother is on and nothing has been done, then mention that as well, naming names. Even if they don't deal with the secure ward question they should be dealing with the availability of cannabis. This may help. Apologies if you've already tried this but thought I would mention it just incase! Best of luck, thinking of you and thank you for sharing your story.
11. At 06:31 PM on 16 March 2009 keep breathing. wrote:

Lauras blog, response

If all else fails keep breathing! this is what a very dear friend once said to me...and how true. after years of being in the wilderness whilst coping with a mother and brother who both had serious breakdowns within a short period of time, ...sometimes all i can do is just that, breath. Even that i have had to learn to control during or after frightening or confusing outbursts from them... and tell myself, it's going to pass. i'll be ok. It has and still is a tough road to walk at times. There is no one helping myself or sisters and our children cope with sometimes alarming and distressing symptoms and behaviour when one, other or both are...not well. i can understand why people feel left, over looked or even a bit stilted by their own need to reach out and 'complain', because it means having to tell and admit to oneself that all is not alright and well, infact it's tough, sometimes. But you will get through it! You, have a right to be, too - even if those in positions to help you seem not to care - you will find others who do. And hopefully others who will hear you, and read between the lines (even though you'd rather they did not, could not, or that you never had had cause to speak out in the first place) because you wished with all your heart your loved ones who have changed, hadn't. That they were well again - back atleast to their old selves. as i said earlier, if all else fails - keep breathing! and know, you are not alone, people do care - just keep knocking till you find the right door. lots of love be with and guide you, and courage to just be you remain.
12. At 07:09 PM on 15 February 2009 Emma wrote:

hope

Hi there it sounds really frustrating for you and your family and its sounds as if your brother should be better watched. Its great that you are so open and you really seem that you really know what you are talking about. i would like to over you some spirital advice which is often overlooked in such cases. I think if you pray for your brother it would perhaps help i recently heard a story of a women named liesel would had a mental illness and was healed. Iam not suggesting that he stop medication but prayer may help. There is a website you should check out called free to live which has her story on it what have you got to lose and it is interesting. prayer has helped me cope with mental illness. And those who have religion in their lives tend to have lower sucicide rates as you might know.
13. At 07:18 PM on 14 February 2009 jo wrote:

my brother

i am so glad i have found this site,hearing how other peoples situations are very similar,or if not the same as mine,I feel completely alone with what i am going through.My brother has been mentally ill for years since he was about 15,he has had no life, no friends, nothing.I feel devastated by this,watching this happen to a close family member.Its such a hard problem to tackle it affects the whole family, espeacialy my mum.We think its schizophrenia he is in the proccess of being diagnosed.I just hope to god there is some light at the end of the tunnel...
14. At 04:08 AM on 11 February 2009 Sandra wrote:

Does it matter?

Does it matter what your brothers label is or that you have to complain alot?If you didnt complain things wouldnt change. The last time I was sectioned my husband had to complain about my treatment too. They were giving me the newer anti psychotics which were making me worse and they just kept trying different New ones .None of which worked then they added mood stabilizers which made me worse . Now I'm on a low dose of a depot of Haldol which works very well. But if he hadn't of complained I'd still be in hospital trying New drugs. I think you are right to complain about being on an open ward when you're supposed to be under section. If something where to happen to him or someoneelse whist he was under their care the hospital would be liable.

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