Front Page 1 Who is to Blame 2 The beginning 3 Getting Help 4 The affect caring had 6 Challenging the System

5

What I did

I used to be a trade union convener I started thinking to myself. If I can stand up for all the people I had at work, then there was no reason I could not do the same for my son. 

I started making phone calls to everywhere I could think of.. What would I do as a trade union rep? I had already tried the direct approach, by voicing my opinion and concerns to the people involved in Stevens care. The only other avenue that was left open to me was going to the top end of the service.

So off I went, I contacted the chief exec office, patient’s advice and liaison services, director of MH health, patient and consumer affairs, and then somehow I got into the legal dept. 

This took two years of pestering; I kept coming up against a brick wall. Then I had this idea..confidentiality..of course. Nobody said this to me, but it was worth a try. I typed this letter up for my son to sign. I think I worded it sensitively enough, I did not want to know anything that was confidential I wanted to be listened too. The wording was that I give my mother Mrs……. The authority to act upon my behalf, in matters regarding my health. I gave a copy to our GP and one to the psychiatrist. 

Did not make much difference to start with, I still had to keep pestering. Then I made another call to the legal dept, the lady said she would pass on my complaint. Yes I had heard this one before. It was not that I did not think that she would not pass it on, but who was going to listen. I was starting to get stressed and annoyed. The next day I phoned the legal department again I was a bit huffy, I must admit. The lady was also defensive. 

I thought about this after, and though the poor woman sat there minding her own business. Answers the phone to some irate carer, it probably came across I was blaming her. So the next day I phoned again, apologised to her explaining what I have just said. Told her I am not normally like this, but I have had enough. Mentioned I was on medication myself. I was so calm when I spoke to her, I often wonder if she thought I was suicidal.

Then suddenly my son has a CPN. He listened and talked to me. I was quite down I must admit. He not only started supporting Steven but myself as well. Me being supported! I could not believe what was happening. I felt like I was being spoilt. 

I have got to mention his name, because Phil Wilson was the best thing that ever happened to Steven and myself. I kept going on about Steven being treated with the Recovery approach, a conference came up in Taunton about Recovery. Phil told me about this,I could not drive and Steven was not too keen about the train, Phil took us there. We had a long chat on the way up about carers and the system. I already knew quite a few people at the Conference through my involvement with support groups. 

Phil listened to me about the vomiting and my thoughts on the medication. Then I heard the psychiatrist was now thinking of having Steven in hospital for observation..at last, I thought. In between this Steven was once again referred back to the gastroenterologist. This time I wrote a letter to the consultant accompanied by the letter Steven had signed. I mentioned the medication and a few other possibilities as a result of something I had read. 

Then a member of staff from the hospital came to see Steven, to assess him I presume. I mentioned about Steven being taken in for observation and was told “There are people far worse than Steven out there” not too sure why he said that. But I got the impression he was not going to be going in for observation. 

Then I had to start pushing again, I phoned the psychiatrist and was told there were no beds. A few weeks later I phoned him again, I asked why he could not go to the general hospital for observation, he was not going in because of his mental health but vomiting. Two days later we had a call there was a bed. When Steven got onto the ward, he was put into an empty 4-bedded room! Even I know people do not get discharged that quickly. Steven spent 10 days on the unit; he did not have any alcohol. Yet he was still vomiting, to the point he was asked to walk around with a vomit bowl.! I thought yes..it was all right when it was happening in my house for 7 years; it’s a different story now. 

Stevens’s medication was changed to Clozoral, as one medication was reduced and the other increased slowly the vomiting stopped. Steven carried on drinking but was not vomiting anymore. On Stevens release from hospital he had the home treatment team coming in giving him his medication. It had to be increased slowly. 

The people coming into to see Steven were all very nice; I got on ok with them as well as Steven. The problem here was, there was different people coming each day, each time Steven would often be asked the same questions. Stevens’s blood had to be taken weekly to check for possible side effects. One person would come one day and say for example tomorrow the medication will increase to 25mg. The next day another worker would say something different. This got confusing at times. 

I was still running around everywhere, going to the GP for his other meds. Trips to the hospital by taxi because he would not go on a bus, costing £7.50 each way. One day one of the workers came to take his blood, she tried first in his arm, then the back of his hand next his foot. She could not get the blood, by this time Steven started to feel queasy, he broke out in a sweat and his skin went grey. He felt as if he was going to faint. It was decided he would need to go to Derriford Hospital outpatient’s dept. To get the blood taken. The staff could not stay with him, so I went. I was given a plastic bag with 3 phials to be filled with blood. While we were in the waiting room Steven felt nauseas, I had to rush to get a vomit bowl then he was sick. The lady who was going to take the blood came out to see him. Asked why he was sent there, what the phials of blood were being tested for and where were the nurses. I could not tell her what the blood was being tested for. The nurses were not there. She refused to take the blood, for three reasons, one she did not know why she was taking it, two because he had vomited and the third because the nurses were not there. We were there for over an hour before they came back to collect us. 

Another time Steven had to go to see the gastroenterologist, I went with him by taxi. Steven was getting the results from the latest test. I was told if I had not accompanied the letter of consent with my letter they would not have taken any notice. Steven was then told again the test were negative and they could come to no other conclusion than, that it was the medication which had been causing the vomiting and it had nothing to do with the alcohol. It took 7 years to get that answer, why was I not listened too, why did Steven and my family have to go through what we had gone through.

To top the day off, half an hour after we returned from the hospital. I had a phone call telling me the bloods that were taken the week before had been lost. Would I take Stephen up to Derriford haematology to get his blood taken. I point blank refused, we had just spent £15 on a taxi, and I had no intention of spending another £15. 

I wonder if anyone one reading this could explain to me, why it is all right to ignore the carer when they observe something or ask a question. But it is also all right for the carer to be asked to do the donkeywork and all the running around? 

By this time the home treatment had finished and I was left in charge of sorting out the medication. Steven was partially sedated most of the time, he would sometimes forget either to take his meds or remember if he had taken them. I started using a 7-day planner. Sorting his meds out weekly in the sectioned box. Because of the nature of the medication and how closely it was monitored by the drug company. The chemist did not supply the meds, they came straight from pharmacy. The plan was it went to the Clinic and the CPN brought them to the house. The CPN was on holiday and somebody else was meant to bring them. They were due on the Friday but they never turned up. By the time I realised it was too late, the clinic was closed. Steven had no medication for the weekend. I had checked out the medication on the Internet and recall reading if he missed more than two days meds, he would have to start from scratch. I phoned the clinic on the Monday they said they did not have the meds. It is the first time I had done this, but I phoned the hospital pharmacy. The pharmacy said the meds were dispatched to the clinic on the Friday? The CPN was back off leave so I contacted him. Phil turned up around teatime with the meds. They had been locked in a cupboard at the clinic all the weekend. I then questioned whether it was ok to still take the meds. Phil Checked this out and it wasn’t. Steven had to start from scratch. I just felt I have had enough of this, it was too complicated. The running around involved. I said this to Phil even Phil was frustrated. He said to me, this sort of thing just can’t be happening to you and Steven. Of course I agreed with him, I wasn’t being singled out. It was decided Steven would try a different medication. 

Steven tried another medication, he was still drinking alcohol, still would not go on a bus. Anywhere he went was by taxi. Steven craved company; he had lost all of his friends. The only way he seemed to be able to socialised, was through alcohol. People he started to mix with took advantage of him. Borrowing money and not paying it back, I was also told of one incidents when Steven had fallen asleep some had taken money out of his pockets. 

I was an appointee for him with the benefits agency, really only for the filling out of his forms and communication. Something Steven would not do himself; I refused to be in control of his money. One reason was I did not want to take his dignity and self-respect away. Later on I knew if I had control of his money he would be pestering me until I gave it to him, I did not want the hassle of it. No sooner would he be paid than he was broke again. I knew these people were taking money off him and I made it know to them that I knew. Apart from this, I felt there was not a lot I could do about it. 

Steven was on this medication for about 6 months, there was no improvement in him. I started thinking back to when he was on Clozoral; he had been showing slight signs of improvement. I remember him once saying to me “I have to think my way out of this” I started mentioning this to Steven asked him if he would like to give Clozoral another go. He said he would, as he was not feeling any better on this medication. I also thought about the problems we had the last time around. I did not fancy all of the hassle there was before. 

Before I mentioned this to Phil, I contacted my GP, asked him if he would be willing to deal with the blood from the start, and have the meds delivered there. The GP agreed to this. The other thing I did not fancy was different people coming to the house.

I thought about dealing with it my self, I knew the meds had to be administered slowly and it would take a few weeks to get to the right dose. I knew Steven would need to have a blood pressure taken regularly for the first weeks. I had never done this before. 

I spoke to Phil about it, told him my thoughts. I also said I did not want Steven to go to hospital; I would take time off from work and do it myself. Then I found the ruling of the drug company was the person stays in hospital for a minimum of 12 hours to be monitored. I searched on the Internet for this info. The agreement was Steven would be a day patient for 6 hours two days running. On the second day Steven was given the medication to bring home for that evenings medication. When Steven came home he was given instruction to take the meds he was given at a certain time. 

Steven queried to me the amount he was given to take compared to the last time. I remember saying perhaps they are doing it differently this time around. They should know what they are doing. Steven took his medication and went to bed early. Later that evening we had a phone call, I thought my husband answered the call but instead the answer phone activated and took the message. I went downstairs a few hours later and heard the phone beeping in the other room, which indicated there was a message. I listened to the message, it was the doctor from the unit, phoning to tell Steven not to take all the medication she had given to him, which was four days supply only to take one tablet. 

It was too late, he had already taken them, I phoned the hospital and was told to bring him straight in. We got to the hospital at 12.30am. Needless to say I was not very happy about this. He had only spent 12hrs in total in hospital and still something went wrong. Steven had to be checked every hour through out the night. Luckily there were no adverse effects. Steven returned home the next day, Phil brought the blood pressure machine. I was shown how to use it and I was phoned 3 times a day for the results. 

From here on in things were plain sailing, I took three weeks off from work and followed the instructions given to up the dose of Clozoral and reduce the other medication. Phil popped in now and then to check things were going ok. 

The only problem was Steven was still drinking alcohol, one thing I thought was odd, was he could stop at any time without withdrawal effects. He was still using the alcohol to self medicate. Still not able to leave the house unless he went by car or taxi. 

I got to the point where I did not know what else I could do to help Steven. I remember once saying to Phil, I thought Steven needed a shock to get him out of this. I did not know what it could be. I felt if something shocked him enough to make him paranoid about it, this might be enough to bring him to his senses. In other words his symptoms could be used to get him better. 

A few months later Steven went out drinking all day. The next day he looked like death warmed up. I recall my two grandchildren were here; the eldest who was nine was in the living room with Steven. My husband was in the garden with my youngest grandson. I heard a crashing sound then my eldest grandson shouting to me, that Steven had fallen over. I ran to the living room and as soon as I seen him I knew he was having a seizure. I immediately phone for an ambulance, for a minute I forgot my husband was in the garden. I stood looking at Steven, I actually felt disgusted, looking at the state he had got into. In that moment I thought, that’s it. I cannot take any more of this. For me it was the end of the line. Then I remembered my husband in the garden, I called to him. He used to be a first aider at work, When Steven fell he had landed on top of the pushchair and was still there. My husband tried to get him into the recovery position, but could not turn him. He straddled over him and held Steven with his legs. Stevens tongue was blocking his airways. My husband was trying to force his mouth open to free up his tongue. He ended up pulling down on Stevens’s lower jaw to get his mouth open. Once he managed to open his mouth he started to breath more freely. Steven started coming around within seconds, the seizure had lasted well over 5 minutes. The ambulance arrived, at first I was not going to go to the hospital with him. But gave in, it took over two hours for Steven to become properly aware. I told Steven while I was at the hospital, how I felt and said if he is going to carry on destroying himself he will have to live somewhere else. 

That day was the turning point for Steven, the shock I mentioned I felt he needed. The seizure was not a nice thing to happen to him but it did him a favour. He stopped drinking alcohol immediately. He was too afraid to drink again for fear he would have another seizure. 

Slowly he started trying to get his life back. He joined the football group first provided by the MH services. He then tried college doing a course for people with MH problems, one involved maths something he was always good at. This was simple maths he did not find very challenging. He was also not over confident in going to the college. He stopped going, instead he went and bought course workbooks A level standard. He studied and did the work at home going through every assignment, trying to brush up on what he was capable of doing before. Steven did this for about a year, he also started to attend the gym. The following year he went back to the college to do a Vocational access course. 

September 2004 he started at mainstream college taking a two-year course in telecommunications.  Steven has also been made captain of the class football team, which all goes towards boosting his self-confidence. Stevens’s symptoms still cause him problems at times; on a few occasions I have known him to come home early from college because of it. When this happens I will talk to him about it tell him how well he is doing and not to let his symptoms get in the way of his studies. 

Another achievement for him is, he applied for a driving licence. He had to go through a lot of red tape to get it, because of his illness. It took approx nine months to get sorted out. Almost daily he would be down the stairs searching for the letter from DVL, he got the letter just before Christmas and now has his licence. He had lessons before he became ill, 10 years ago. Steven recently went on his first driving lesson and came in beaming all over his face after. Another step towards recovery is what I tell him.