MY WONDERFUL CARE

Introduction By Susan Bevis

“I WANT TO BE FREE MUM”

Elizabeth was given the opportunity to get away from everything and stay with some MH professionals in a very different environment.   Elizabeth has in the past experienced care under institutions such as Bethlem Royal Hospital (Bedlam), Cambion and Cygnet Stevenage, various community schemes and she has lived at home for over two years without any problem.  The problem is that the “care” itself that does not address the underlying issues if someone has experienced severe trauma.   If underlying problems are suppressed by drugs and not dealt with then patients end up back on the wards time and time again hence the current bed crisis in hospitals.   Lack of care and support in the community is another reason why mental health care is failing but environment is so important too and Elizabeth has been in a peaceful environment, the opposite of where we live.    Elizabeth has been on huge levels of drugs yet was expected to do chores but could barely function on as much as 800mg Seroquel.  We have seen Elizabeth manage on a very low dosage of drugs but they are near impossible to come off as what is needed is the facility to do so and I am glad that Dr Joanna Moncrieff is doing research into this under the RADAR programme.    Stigma is rife under the MH system in the UK which forces people to take drugs long term but this just suppresses the trauma and abuse which may have been suffered by such patients.  Furthermore on wards in the UK patients can be  forcibly drugged and injected on they do not comply with “treatment”.   The MH professionals Elizabeth stayed with have proven that she could be talked through episodes of anxiety and she coped so well with so many changes and confronted her fears whilst away and I would consider talking through anxiety to be humane care as opposed to drugging someone forcibly.    There is no choice without the use of drugs to people under MH care system of the UK.  There is no facility for someone to go in and be maintained on the very minimal of medication and receive therapy in the UK.  Even in the community care is “controlled” under CTOs which is just another word for forced drugging.  I think this is very cruel and this system does not work. People do not get better.   I had been looking for something better for Elizabeth and found the right care under http://www.working-to-recovery.com.   A patient is known as a “student” and they are treated in a humane way. Professionals within this organisation take a very different approach and try to deal with the underlying issues and I have seen that this approach has produced startling results.  It is all too easy to drug someone to the hilt but they never get better this way.

Trip of a Lifetime:

It was August Bank Holiday 2016.  Elizabeth was invited to stay with some MH professionals in their family home in a very beautiful area.   She was meant to stay  two weeks but requested to stay longer.  At around 5.00 am on Saturday having spent the night at Kings X we boarded the train to Edinburgh.   We had watched Elizabeth going downhill locally. She was struggling to walk and struggled to go out to shopping centres, she was afraid to walk over bridges.  She had suffered a bad reaction to 20mg of the drug Aririprazole and I have reported this to the FDA.   The train ride was a lovely – Elizabeth had complained of bad toothache which we did not know about until the last minute.  I was worried that she would refuse to go but she didn’t and I promised this would be sorted out once there and it was by the wonderful professionals who took care of her.   Elizabeth was met by these professionals and I felt happy leaving her know she was safe and with good people.  For the first time I could relax and feel good that Elizabeth was going to have a wonderful experience and that I was setting her free.   I went on to Edinburgh Fringe Festival – my first time in Scotland and enjoyed it so much I missed my last train back home. I ended up in Doncaster having to stay overnight.    Elizabeth always said she wanted to be free and I felt happy to do so as there were lots of restrictions under the “controlled” care which is all that is on offer in the UK unfortunately.  Elizabeth’s life was not good – too ill to work – nothing much in her life, the local area did not contain happy memories.  There were meetings 9 professionals – 1 she had to attend and chores before and no review in medication in sight despite having a bad reaction to the drug and an email from Dr Moncrieff said this drug caused agitation and anxiety.  Elizabeth spent some restful time in a really relaxing environment and after two weeks being there Elizabeth was given another wonderful opportunity of a lifetime – a fascinating holiday.   Elizabeth will now write to tell you all about her experiences which I am very glad I provided for my daughter who complained that her life was ruined by the drug treatment she had received under MH care.  I never expected this would be a complete “cure” but when she first came back, it was like a miracle – we saw a very different person than we had ever seen before.    If you were to take someone off an acute ward and offer this experience instead of long term incarceration on wards and the drugging that is forced,  then that person would come back much improved and this shows how wrong everything is in the uk. However, such treatment needs to be ongoing as I have since found out.  There is a lack of the right kind of care and support in the UK that is for sure.

Dictated from Notes Elizabeth made:

30.08.16 – 05.10.16 My time away in Scotland, Spain, France to Australia

Before I went away I struggled to walk to places.  I was fearful walking over bridges, anything high up or shopping malls/airports.  I would avoid situations. Sometimes I felt so bad I would avoid going out altogether.  I had not been away on holiday for a long time as I had not felt well enough.  I said at first that I would not be going on holiday to France and Australia and I was given the choice to remain at the family home with professional staff provided.   My two weeks holiday was to be spent in a lovely peaceful and natural environment – there was a dog, pigs, chickens.  I had never been to this area before so I did not know what to expect.  I asked if there were takeaways where I was staying but was told no and that we would doing home cooking.  Once I had arrived the first thing sorted was a visit to the local dentist where I was relieved of my bad toothache I had suffered for a long time before.   At the scheme I was eating not the best of food and takeaways.  I was now having food that was fresh and organically grown.  There were some takeaways in the town but I was not going to them like before.   I remember the fish being so fresh, so much better than anything I had bought before.  I knew I would be working with a very different team  who offered a different approach.    One of my greatest fears was wide open spaces and heights. I felt challenged at first by being taken out on walks where land was uneven and I had to deal with my fears of heights as land was hilly and we were high up.   My memories include walking in fields full of cows/sheep, wild, unspoilt and beautiful countryside, lovely sunsets, seeing northern lights, feeding chickens and pigs, collecting eggs and of the family dog.   I remember visiting the lighthouse in very windy weather conditions.  When I first arrived and weather was OK  I went into the sea up to my waste but the water was freezing.  I was encouraged to face my fears and anxieties and I slowly built up confidence by going out  regularly. I was up around 8.00 am every day completing my work book, watching educational MH videos as well as Tai Chi.   There was another person staying at the house of around my age and we would go out shopping together.  I worked with an art therapist who taught me the technique of  “threading”.  I did painting and pottery and I have made two very nice scenic pictures using the threading technique.   I went to a local gym once a week and there was a nice swimming pool I visited.  We took it in turns to cook healthy meals.  One evening there was a cultural event – a “Bollywood night” in a local arts centre.  We watched an Indian film with sub-titles and afterwards there was dancing..  I really enjoyed it.  There was also a psychotherapist who stayed at the house with another professional which I found very helpful.  I visited the town for shopping with lovely views of the sea but was glad I did not have to depend upon buses which were not frequent as I am used to.  I remember a familiar well-known supermarket but lots of lovely individual shops.  I was only meant to go away for two weeks on holiday but wanted to stay longer and then I was invited to go on holiday.

I had the opportunity to travel all over Scotland visiting Inverness, Dundee, Aberdeen, Edinburgh and Glasgow.

6.10.16 – France and Spain

I can remember a long journey on the ferry to Santander – not too bad a crossing from Portsmouth to Santander, then being driven to Bilbao where we spent a night in a nice hotel.  Weather was hot.  We then travelled to Carcassone where we stayed about a week in a guest house.  I found this drastic change in environment quite a shock and hard to adapt to at first.  I suffered from bouts of anxiety and fear but instead of drugs the professionals dealt with this by talking therapy. Eventually I managed to settle down and venture out and I had learned a few words in French to buy nice food from the local boulangerie  just down the road where they had a fantastic selection of bread, cakes etc.  I was impressed by the local delicatessen nearby.  One day we hired bikes and went for a two hour bike ride beside a canal which was very challenging for me.  I had not been on a bike for a long time.

As we explored the town visiting the Medieval City I experienced difficulty in walking up hills –  I blame the medication for the way I have felt and I have been on large amounts of drugs in the past but was on less of the drug but it still gave me a feeling like you are like you are weightless, fearful of falling, sensation of feeling your head is going up to the sky and that you will lose balance but I was encouraged all the time to carry on. We visited La Cathedrale Saint Nazaire et Saint-Celse

We then went on to Marseille –  I enjoyed this very much as we went on a  boat trip to Frioul Island and Chateau d’if .  The weather was really hot.  You could go swimming off the boat and I also have good memories of fresh sea food at the beach.

From Marseille we travelled to aix en provence, Lyon then Paris where we attended the Intervoice/World Hearing Voices Congress.  At the Intervoice event I was invited out for dinner with four French MH professionals who made good effort in trying to speak to me in English –  I think one of them was a psychiatrist.  We stayed on a house boat in Paris close to transport and this was a wonderful experience for me.  At first I was afraid to go on the houseboat but it was quite comfortable and convenient to all the sights. I refused to go up the Eiffel Tower but stood nearby and then we returned to  Caen catching a flight to Glasgow and by this time I had gained confidence I would not have entered an airport let alone get on a flight but we took a flight to Glasgow and I had by this time agreed to go on to Australia for six weeks.  I will write about this later.

 

 

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