Mental illness /the need for supported accommodation for the mentally ill This is my story as a carer although it isn’t only mine it is also my sons and the experience of many many other families/ my son has the diagnosis of chronic schizophrenia thru trauma not drugs /loss of cognitive function due to his illness or the medication or the trauma of the accident that he had 25 yrs ago??Or combination of all He has the classic insight into his illness; Doctor asked him “Tell me about your illness… 2 points of view 1st I don’t think there is any thing wrong with me 2nd everyone else tells me there is I manage my son’s financial affairs because one of my greatest fears is my son becoming homeless Which a few yrs into his illness was about to take place / He was in debt, writing bad cheques, behind in his house payments no money for food etc my husband and I bought him back into our home to help him the 5 times he nearly lost everything, but once my late husband needed full time care we couldn’t do that anymore One time he rented his home and lived in a in a 6’ popup campervan in a caravan park and at the time was so unwell I was concerned he would commit suicide and where do you get help? Another time he wanted to sell his very modest home buy a tinnie live in Lakes Entrance and fish, because he enjoys fishing, his reasoning at the time was he could live in a caravan park during off season and camp in the bush during peak season and make his living by fishing. I know that you say the hospital and secure extended care is not to be included in our submissions but I really don’t see how you can exclude them because the very nature of mental illness disqualifies that. It Is Known that the sooner an episode is treated, with change of medication and a safe environment for this to take place the better the outcome and that unless this happens the more engrained the paranoia becomes which is what has happened in my son’s case The fact that we have only 25 acute care hospital beds 6 SECU beds and 2 adolescent beds a total of 33 beds in the whole of greater Gippsland dictates to the conditions they live in when they are unwell and unable to take care of themselves and I mean unable to care for them selves in an appropriate manner in the community with or without support this is why they need a safe place The need is great and is getting greater/ numbers of mentally ill increasing, even when they are in hospital there are times that they sleep in /caravan parks/ motels /and then come on the ward during the day My son has had his illness for 25yrs and has over the years steadily got worse; because of the lack of intervention or dare I say lack of hospital beds I so admire my son it takes great guts to live with his illness Even when Hobson park was open there were times when my son had been unwell and admitted to the hospital because the nurses and GPs deemed it necessary, only then he to discharged when seen by a psychiatrist because he didn’t meet all the criteria /one time he went home and smashed most of the windows in his house. I as his carer had to go into his home and wash his blood of the walls, cupboards because he was too unwell to do it himself. I kicked up a storm then Not taking care of him self is one of signs he is becoming more unwell because he normally is so fastidious about his home and person. We his family have had to go in many times to clean his home while he has been in hospital We have struggled for years with the ups and downs of his illness and the system there is a lot of anger, frustration among the clients and carers in not being able to get help appropriate well timed help when it is needed To be told Lyn I know he is unwell but we have people who are much sicker than he is and we can’t get them into hospital This went on for 6 months /my son went from 120kg‐69kg because in his delusions and paranoia he thought his food was poisoned / smelt and tasted, the water in his taps was contaminated so he couldn’t wash his floors etc he was unable to care for himself in fact became such a danger to himself he was placed on a Community Treatment Order and they had to hospitalise him but at first we were told there wasn’t a bed in the state I have been told the hospital is only for acute care to get them over the crisis stage they are then to be discharged and the community is to pick them up and get them well. The community is the PDRSS Psychiatric Disability Rehab Support Services and their Case Manager who are worked into the ground having 15 – 25 clients or more, each having to pick up the slack when any other workers are sick A policeman came and spoke to a group of us, he said they will pick people up knowing they are unwell, will take them to the hospital only then to be told they are not unwell enough to be admitted they don’t meet the criteria, the police role is to take them to the hospital but not to shop for a Doctor and of course this leaves the police in a dilemma what do. What can they do except be ready to answer the next call or pick them up in the streets It is no secret that the homeless situation has increased dramatically and that a fair proportion of those have a mental illness. Nor is it a secret that some of our mentally ill are in our prisons. I’ve spoken to a worker from another service who deals with the homeless, many of whom have a mental illness / those who for what ever reason don’t have anyone to support them /these are the ones who fall thru the cracks/ those who have trashed their rented places of residence and don’t have their Mum to go in and clean up/they go into hospital and then have no place to go when they are released, they try advocate for their client with the landlord, pay rent arrears / maybe having to pay rent in advance if that doesn’t work /they seek to find transitional housing for them /e.g. Elderly Persons units which you will I hope agree is very inappropriate for both the aged and ill or, caravan parks &have to give money to buy food, clothes When I asked if given a wish list what would she ask for? The answer was that there appropriate housing be available, not 3 bedrooms. Don’t just lump them all together in one street without assistance and please don’t put them in the same area as those just released from prison. Another aspect, is that these are very vulnerable people and very often are so easily taken advantage of My son was admitted to hospital boxing day 06 by his case manager because he was so unwell. We had been promised a bed in the secure extended care unit early September 06 for a change of medication that required constant monitoring and still requires monitoring It was his psychiatrist who wanted him admitted but still we had to wait once again no hospital beds available, while my son suffered the effects of his illness in the community The word traumatic describes 06, the beginning of 07 wasn’t much better; I sometimes wonder who is running the whole mental health system. The outcome of the year was that my son spent 6months in SECU. Then was moved to the CRCU for 12 months where the care was excellent, with assistance into practical help restructuring their lives following the stepping stones program. In the units he had help 24x7 The staff got to know the strengths of each client and the areas they needed extra help /remember the loss of cognitive function e.g. budget /meal planning /shopping lists / cleaning and very important, social skills the very nature of their illness tends to isolate them, its very hard interacting with them when they are unwell. They had other activities Like gym, swimming and interacted with PDRSS workers for art etc He has now been discharged about 6 weeks ago not cured, he still has all his delusions and paranoia and the voices but to a lesser degree There is one PDRSS service that visits my son in his home ¾ hrs a week, but if they have one or two staff ill it really does throw a spanner in the works. His case manager visits once a fortnight or more if I ring and tell him I’m concerned he has a blood test, and sees the doctor once a month. So from 24x7 a week his direct care now is 1 hr, with another possible PDRSS support of 6hrs (if he is well enough to attend which really means cope with his symptoms) = 7hrs There are 14 CRCU units but this is hardly a drop in the bucket this is not enough, the need is greater, and when my son was to go in there he was 1 of 2 people for the 1 unit, so they already had a waiting list. I asked my son what was the best thing about the CRU he said it was the Village life atmosphere having your own personal space and life, the garden area, having supervision and plenty of support, he felt safe LRMHS received the funding for the CRCU before the units were built in Traralgon so rather creatively they decided to use the staff by going out into the community and provide some extra support in the clients own homes, at that time they were visiting and helping 130 clients on a weekly basis this service worked and everyone Knew it worked and as a Mum it was really great to have another person helping my son with his budget and the finer points of living and again they really got to know him the best thing about this was that they were not putting on activities it was genuine one on one help of life skills. But this of course had to cease when the units were opened and so did the extra help for the 130 clients. I was not happy when that stopped because I want as many nets as possible under my son. Both services are needed but this is still not the whole answer PDRSS services provide extra support by having activities when the client is well enough to go and feels they can cope. The client has to choose to go to these activities and some times the are not well enough to make that choice His caseworker is wonderful and has fought along side me to get treatment for my son, but their work load is great and they themselves are constrained by the system and they are so frustrated when they know their client needs extra help, maybe a stay in hospital to stabilise them but there are no beds Impact on families /well some families check out unable to cope with the change in their loved one or just plain give up others are pushed away. I am blessed in that my son at this time accepts my help but still the stress of his illness has been a toll on my own health There is the strain on relationships within the family and of course financial strain I have had to take up the role of advocate for my son’s right to treatment, seeing management, ringing the Chief Psychiatrist, going with him to doctor’s appointments, speaking personally to parliamentarians writing to Newspapers, interviewed for Local Newspaper, speaking on the radio talkback etc because we are not being heard. Some one asked me couldn’t I just trust the services to provide the right help my son needs. The answer to that is swift resounding NO As my sons Mum /carer I am the one he calls, I am once again the 24/7 at call support service I am getting older and I’m getting tired I have my own health issues to deal with so my question is what will happen to him when I die? If you know the trauma that a mental illness causes, the upheaval to everyone’s life then you would know the great need for supported accommodation 1. More hospital beds are needed so treatment can be given when required to maintain a level of wellness to prevent delusions paranoia becoming ingrained. TREATMENT. 2. More SECU Beds are needed they provide a quieter place to recover. RECOVERY 3. In Gippsland there is no real indication of the true numbers of people with a mental illness requiring accommodation nor is there a single agency or organisation who can give definite information on the number or type of accommodation for the mentally ill 4.There is no long term fully supported accommodation for people with a mental illness under 65 in Gippsland except aged care facilities which is totally inappropriate and inexcusable this leaves them with about $30 a week to buy their clothes and personal products and if they are a smoker? Without family support, well, need more be said? 5. More full time supported accommodation Units like the Community Residential Care Units are needed, creating a safe village life style, because as I said before these people tend to be isolated, people do avoid them not understanding their behaviour when they are unwell and their behaviour differs and there are times when even I avoid my son 6. More support dollars need to be given PDRSS for more staff to provide more people with support. Their waiting lists are full of crisis cases, of people in dire straights I was told by a worker that their waiting list was so long, that by the time they got to ring people that they could now pick up their case, only to be told it is to late they have either moved away or sometimes committed suicide, this is heartbreaking for everyone and should be so totally unacceptable in this day and age. Their pick up rate relies on getting people thru the service but of course each case is different so it isn’t a give period of time that is the primary focus nor can it be: it is the individual’s ability to cope Another strain on the all ready strained service is that MHS of course rely heavily on PDRSS when people are to be discharged from the Flynn or SECU and CRCU 7. We need to have purpose build accommodation with built in continued support I know I have quoted a number of workers without identification the reason for that is that there is a fear for their jobs if they speak up. But I have been asked to fly the flag high and tell my story because I and my son are not isolated cases Can I quote another long time worker with out apology “Why another Inquiry? Don’t they know the need and of course the answer is no and that is the tragedy. Does holding another inquiry lessen the Governments Guilt? And please don’t let it be just another number taking, without any action” I want to thank you for having this inquiry But would echo the workers sentiment please don’t let this be just another number taking without action soon. Because the need is great, 20% of the population have these needs I’m asking that the Victorian Government take the action needed that will ensure that a system of population based, appropriately supported accommodation services, with access to choices, be created for people with mental illness. Submission To Victorian Government Family and Community Development Committee Inquiry into SUPPORTED ACCOMODATION DISABILITY AND MENTAL ILLNESS OCTOBER 2008 Submitted by: Lynette Douglas CARER/ MOTHER On behalf of my son and those who don’t have anyone to speak for them Re: mental illness 45 Murray Rd Newborough 3825 Phone: 0351 272 972 Email: lynd777@vic.Com.au
"Mental illness the need for supported accommodation for the"