The story of a family with a seriously mentally ill son as they journey through local mental health services.

John and Kirsty's story.

This piece is a tale of a family with a seriously mentally ill son as they journey through local mental health services. It illustrates the shock and bewilderment of well educated and professional parents as they stumbled from crisis to crisis as their son fell deeper into the system. The story is a personal chronicle, which shows all the major failings of the services offered to the families who experience the unexpected trauma of mental illness. It illustrates the lack of compassion shown in almost everyone the family met during that torrid time. Positive suggestions of improvement to services are included.

January-March

This is a story of a family that had no experience of mental health problems. The story is true in every respect and illustrates that even today there are major problems in many issues .

B is the younger son of a family who had no previous experience of mental health issues. It describes part of the journey that young people and their carers have to undergo before help becomes available.

B had been ill before. Two years ago he had been admitted to the local hospital as an informal patient. No-one told us anything at that time. It was a very dark period in our lives. We had desperately tried to manage the situation before he had been admitted. But our GP ignored our pleas for help and told us we had to wait for the crisis. We felt very alone and very frightened.

Over the previous few months I had been attacked 4 or 5 times, but then on Boxing Day B attacked my wife.

But still our GP would do nothing. We waited in his waiting room for 5 hours until there was a sudden change of heart. The ‘swat’ team would arrive at our house. Emotionally I could not cope. My wife bravely went in with the police. B agreed to be admitted informally.

But B’s illness had not been diagnosed.

Two years later on 21 January 2002 we had some friends to stay. These friends, John and Jane, were old University colleagues that I had known for 30 years. They had travelled up from Bath that evening.

B arrived at our front door some 5 minutes after our friends. His mood immediately darkened when he saw our friends and started to demand that they left the house. He believed that John was an impostor and that he was B’s own neighbour who lived in the flat above his and who had been giving him some hassle.

Soon the situation reached the stage where B was becoming so agitated that I had to suggest that the police be called. B managed to control himself for a while and went to apologise to John but immediately afterwards lost control and started to attack John.

I called the police but, on their arrival, B did not believe they were the real police and after a short discussion B tried to attack them. It was at this stage that handcuffs were produced and through my tears of emotion and sorrow I managed to see enough to help put the handcuffs on my own son.

He was taken away in the police car in handcuffs but he was not taken to the local hospital. There was no bed. He was taken to one of the main city hospitals and placed in A&E.

The policewoman involved, recognising our distress, kindly called us two hours later to tell us that B was much calmer but he was still in A&E and still in handcuffs.

Is this a considerate way to handle the situation? Just what did go through this young man’s mind? Was he frightened? Was he terrified?

That night, just before midnight, whilst in bed my wife was trying to come to terms with the evening when the phone rang. The Social Worker formally told me that B had been sectioned under Section 2 of the Mental Health Act and that he would be detained at the City Hospital. ‘I hope you are not too upset’. The conversation lasted about 1 minute.

• No further information was given to us.
• No follow up phone call was received to ask if we were ok.
• There were no signposts to an organisation that might help us through our own family problems.
• We were left with no guidance.

The next day I called the hospital unit and hand delivered some social history on B, addressed to the Consultant Psychiatrist. But despite asking I was not invited to see the Consultant Psychiatrist.

I phoned the Consultant on arriving home and again the next day

I found out later that B was first seen the day after he was admitted but not again for another 6 days.

But the consultant never returned my phone calls and did not invite me to see him at any time to discuss B’s condition.

It was discourteous, frustrating and exasperating.

After 7 days, without any further contact with my wife or me, our son was transferred to a local hospital.

B was transferred to his ‘home patch’ in the unit in the local town and put under the care of Dr W.

Following a phone conversation to this unit the consultant psychiatrist Dr W. agreed to see me and, after an hour’s conversation, he asked me what I thought the problem might be. I said that I was not qualified but I thought it might be something like schizophrenia. He agreed.

B stayed in the unit and we, as parents were not encouraged to see him. We were content to follow the hospital’s advice.

However I waited for someone to contact me to see if ‘the system’ would help by providing further assistance or guidance for the family.

Absolutely nothing happened.

After 5 days I phoned and asked for a Carers Assessment.

The Social Worker was not sure if I would qualify since who qualified as a carer would be discussed and confirmed in the ward round with B’s permission.

What!?……we are his parents and have looked after him for 25 years.

No-one called me

After another 5 days I phoned again. I was told that a Carers Assessment could not be completed since the form contained a question on medication and B did not want to reveal what his medication was.

I suggested that they could leave the answer to that question blank. But procedures stated that was not possible!

I called the manager. They had spoken to B and he had given his permission for them to see me! And perhaps on this occasion they could complete the form. The form was useless. How many times did I wash B, how many times did I do the laundry, how often did I go out shopping for him. I felt it was a complete waste of time.

But the team had presumably ‘ticked a box’ and had helped to meet a target in completing a Carers Assessment.

I called the hospital every two days to see how B was progressing.

On 15 February I was phoned and told that B was to be held in hospital under a Section 3. Did I have any objection? What could I say? I had no information on which to base any decision.

The Social Worker subsequently wrote to us a very brief letter (18 February) and enclosed a copy of ‘Patients Information Leaflet 21’.

This document simply gives information on the Rights and Responsibilities of the Nearest Relative but no contact number. As a signposting document it is useless.

Of what real use is this document and what purpose does it serve?

On 28 February the NHS Trust wrote to me, out of the blue, to inform me that D had applied to the Hospital Managers for Discharge. B is clearly not well and I am appalled that B might be discharged and phone the Trust on receipt of the letter to enquire what is going on. I am told that Discharge means a possible review of the Section 3 and that B might become an informal patient.

And how am I supposed to understand what impact that will have?

Just what is going on?

How did we know what the discharge procedures were?

How could we help our son? Who knows!

No-one followed up the letter; the silence was deafening.

B is not discharged.

On Tuesday 3 March I take B out of hospital for a ride in the car for 40 minutes. It is first time out with either his Mum or Dad. It is very sad. All he wants to do is to leave the unit.

On Friday 8 March 2002 I am asked to attend a ward round with Consultant Psychiatrist. I arrive 10 minutes early and am told that the Consultant Psychiatrist wants to see B.

I am told to go into the unit’s kitchen and make some coffee for myself.

How? Where is the machine?

And amongst people who are clearly not well. I feel nervous and anxious, how am I supposed to react?

Is this a way to treat someone who may never have been in a mental hospital before?

After some minutes I am led through to the consulting room.

B is there with the Consultant Psychiatrist and it is there that I am told that B will not be able to visit us at home until the following week.

Then I am told in front of B, with no warning, that B might be suffering from paranoid schizophrenia.

No warning? Yes, no warning.

What am I supposed to say?

How does the Consultant Psychiatrist know how I am going to react?

I put on a brave face, I try to lift B’s spirits. But…… I feel devastated.

B asks if he can go for a drive with me. The Consultant Psychiatrist says he can’t. B walks off, the Consultant Psychiatrist walks off. I am left standing there alone. No-one shows me out. I punch in the security code and leave the hospital feeling cold and numb.

What is the outcome for this illness?

What is the treatment?

Does anyone help me? No

Does anyone ask how I feel? No

Does anyone see me out of the hospital? No

Does anyone give a phone number of another organisation that might help me? No

Does anyone care? No

I have to go home and tell my wife.

I have to go home and tell B’s brother.

I have to think about B on his own having been told brutally of his life sentence in front of me.

Does anyone call me later? No

I ask again, does anyone care? No

Ensure the carers are debriefed at a later date. Ensure that they are part of the Care Plan and receive a copy of the Care plan. Ensure that there is some auditing process to ensure that the procedures are being followed.

Oh and, by the way, we live in the year 2003

On 12 March I am amazed to be phoned to see if I now feel that I am being included in the care plan of B. What?

Included? Just what does this word mean?

Are there any guidelines, any procedures? And if there are, where are they? Please, please show me.