NSF(S): Untitled

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INTRODUCTION
This second response to the Millan Committee can be read separately, but should ideally be read in tandem with NSF(Scotland)'s first response. For that reason, we have kept the paragraph numbers the same as for the first response. They do not, therefore, read consecutively in this document.
A wide range of views was expressed in comments to questions in the Questionnaire and this is reflected in the following paper.
Comments of service users and informal carers are not given separately unless there is a real difference of opinion or an expectation of a difference e.g. on Community Treatment Orders etc. We have occasionally included a comment from a professional when we thought it particularly relevant.
While the respondents to our questionnaire are not a representative sample of service users and carers, we would refer to the profile of respondents given in our first response. 67% of service users to whom the survey relates (for carers and users) have a main diagnosis of schizophrenia.
63% have had direct (as user) or indirect (as carer) experience of detention under the Mental Health (Scotland) Act 1984, and in the majority of cases within the past 4 years.

3 OVERARCHING PRINCIPLES
3.2 We stated in our first response what has become more commonly referred to as the principle of 'reciprocity'. NSF(Scotland) believes that if individuals' liberty can be removed when they have committed no crime, society has a duty and responsibility towards such individuals. This includes a duty to provide adequate and responsive services.
We asked service users and carers about 3 specific areas of service provision:

Obtaining urgent help from their GP
Gaining admission to hospital
Positive and negative experiences of 'sectioning'

Getting help from GPs and gaining admission to hospital
27% of service users, and 32% of informal carers, had experienced difficulties in getting urgent help from their GP.
20% of service users, and 25% of informal carers, had requested admission to hospital and been refused.
Comments, particularly from carers, illustrate the difficulties of getting help when someone is seriously ill.
While some spoke of a 'very supportive doctor' or of '2 CPNs visiting and calming down the service user', or of being 'indebted to the police and NSF(S) for support during a 2-year nightmare', many others told of GP refusal to visit or refusal of admission to hospital when it seemed obvious to the informal carers that the user was very ill.
The results of these refusals are distressing- suicide attempts, disappearing from home for months on end, anguish for the carers.
Comments from the service users illustrate their experiences, first of GPs:

'when very ill at night, phoned GP (locum) who refused to come'
'problems getting urgent appointment to suit bus times'
'must see GP first to get appointment for assessment'
'help sometimes delayed but occasionally self-harm could have been avoided'
'I have a very supportive doctor'

and then of hospital admission:

'very difficult going through whole process to get admitted. Self-harm was averted'
'I persisted and eventually was admitted'
'my GP phoned to get admission to local hospital but there were no beds and I went to hospital in a neighbouring region'
'I had an emergency admission last year and the assistance and care given to me was excellent'
The comments below illustrate carers' experiences, first about GPs:

'I phoned the GP to say that my son was suicidal, was told this was only attention-seeking behaviour. He tried to commit suicide that same evening'
'son harassed a neighbour and got into trouble with authorities. Help was later refused on the excuse of being outside geographical boundaries of GP practice'
'no response from GP, led eventually to sectioning to prevent death by dehydration and starvation'
'GP refused help, my relative left home for 3 months, living rough and caused problems because of loss of identity documents, leading to difficulty in claiming benefits'
'brother unable to see doctor urgently when going through a bad spell, resulted eventually in admission to hospital which may have been prevented if he had been helped sooner'
'GP refused to come. It was only ¬ mile. We had no car. Over phone, doctor told father that he did not need to take medication'
'GP having fobbed carer off for 2 years, refused to visit home when telephoned for help in a bad crisis. 30 minutes later, violence erupted. My son was charged with attempted murder, sent to hospital and diagnosed as having schizophrenia. Suffering could have been avoided if GP had come as requested'
'at onset of illness, GP was very limited in what help he could give. The result was that I sent for police when I became very scared'
'opportunity to assess user in crisis was passed by'
'GP doesn't see urgency of situation at a particular time. He needs to see problems for himself. My word as a carer does not count'
'Confused on who to contact in future'
'Always good support from GP'

and then about hospital admission:

'refused admission when my life was threatened. He was going to kill me and himself
'person was unsupported at critical time, prolonging the period of instability and in other times resulting in suicide attempts'
'patient deteriorated rapidly without medication, attacked his father and as result has had to spend many years in hospital'
'in early stages she was obviously seriously ill. It took a formal letter to the Health Board and a near fatal suicide attempt before she was admitted and virtually diagnosed overnight as having schizophrenia'
'discharged home leaving friends and relatives to deal with depression and suicide threats. It was difficult to convince the hospital to do something when this behaviour was not observed in hospital'
'brother at hospital for admission, experiencing very frightening hallucinations. He didn't feel safe. He was told he was not ill enough and turned away with no support, no report to his day centre'
'son refused a bed, none available. His illness got out of hand and he was later picked up by police and detained in hospital'

Positive and negative experiences of sectioning'
We asked people what they had found most difficult/upsetting about sectioning; which aspects (if any) helped them to feel reassured and/or supported - and if so, what these were.
Many users found sectioning upsetting.
'an intensely humiliating experience'
'I was separated from my cat, my home'
'I was a voluntary patient but told that if I tried to leave hospital, I would be detained'
Carers felt both distress and relief - distress at seeing someone they loved and had cared for going through this experience but relief that s/he was in a place of safety and would get help. Some carers thought that even the service users seemed relieved and reassured after admission.
Reassurance came from supportive staff:
'the way the nurses treated my son was reassuringly gentle and caring'
'there was good social work contact from the hospital'
'the social worker was a great help to me. He gave me a lot of support and still does'
'staff in hospital did their best to inform us'
'medical staff and police were very supportive'
The lack of information on sectioning was disturbing for some carers.
'I did not realise I could refuse consent nor that I could insist on his release'
'it was upsetting, the locked ward and not being given enough information on my son's condition or on mental hospitals in general. No reassurance or support'
'first time, I thought section was about civil rights and refused to agree. Someone could have spent time with me to explain the system clearly and one's rights and the planned care'
'don't recall being told about MHO assessment. Son's distress upsetting, and knowing that my consenting to section would in future be held against me, and it has'
There were unhappy experiences and mixed feelings.
'phoned emergency doctor, asked him to call at my son's house. I had to argue. Doctor went to house but my son went out after the doctor left and the police had to be called'
'son sectioned so that he could be given medication. This took about 3 weeks as he appealed and 2 court hearings plus a second opinion were necessary. He blamed us for not supporting him. Whole thing worsened by the time it took'
'realising there would be a comeback. There was blame from my daughter and resentment, knowing that I was being cruel to be kind'
'I did find it upsetting at the time but felt then that I had no choice. My son needed help and was refusing to go into hospital'
'no one explained to us about her care under section. They did not listen to the carer about discharge. She set fire to the house within a few months of discharge'
'sectioning is usually done under pressure, threat not persuasion'

4 DEFINITION OF MENTAL DISORDER
including personality disorder
4.1 The question asked was 'Do you think it possible/appropriate to define mental disorder on the basis of need rather than diagnostic category?'
Although a majority of respondents (62%) thought that people should be considered on the basis of need rather than their diagnosis, the comments made it obvious that both have their uses. For some purposes, e.g housing, 'need would be preferable, but diagnosis is relevant for proper medication and for social services support'.
It may take time to get a diagnosis.

'it is difficult to come to a definite diagnosis until quite a lot of time, stress, distress and worry has happened'
'diagnosis can cake years and professionals can take different views and be reluctant to make a diagnosis. Meanwhile, patients are in need of care and families are in limbo, unsure and ignorant of how to act for the best'
'early diagnosis is a great help. It took 3 years with one doctor giving no diagnosis and one visit from another to make a diagnosis. Then, after a short hospital stay, I was given the correct treatment'

Both carers and the service users can be disadvantaged by such long delays.

'the carer can find it easier to cope if a diagnosis is given. The service user may have difficulty getting benefits if there is no diagnosis'
'there are difficulties in accessing services for people who may be in very great need but do not have an official diagnosis'
'I have no diagnosis and a big problem accessing services'

Both the diagnosis and the needs may change.

'diagnosis may be wrong but the needs are obvious'
'diagnosis can change after a while but needs remain'
'diagnosis can be difficult and can only be confirmed after a long period. Needs change'
'I became more vulnerable when pregnant so that my needs changed'

Individuals may have the same diagnosis but very different needs.
'my son needs 24-hour care in a safe environment but other patients who have schizophrenia have different needs'
'diagnosis gives too rigid a description for types of illness that can vary so much in each manifestation'
'same diagnosis for my son and daughter whose illness has had a more stable course and more hospitalisation'
'people react to life's crisis in different ways. Levels of support for individuals vary enormously. People also have different responsibilities and commitments. What one person may cope with, another may not'
'no two people have exactly the same symptoms of their disorder'
'the individual's situation is very important to me as I feel that every person is different and has different needs'
People may also have similar needs without having the same problems. For example, someone with a mental health problem and someone with a learning disability may have a need for accommodation but they should not necessarily be treated in the same way.
If needs only are considered:
'Government shouldn't use this as a means of denying people financial or medical help'
'it might help to produce more sensitive and useful care plans, based on input from the recipient and the provider of services rather than on clinical decisions based on clinical diagnosis'
If diagnosis only is considered:
'once diagnosis is given, then the only route appears to be medication with no examination of other means of help. This leads to closed minds and condemnation to a life of failure and no hope'

4.2 Personality disorder
In our first response to the Committee, NSF(Scotland) expressed concern that a change in diagnosis to/from personality disorder, from another diagnosis, might affect individuals' access to services. 11 % of people who responded to the relevant question reported this experience (14% of service users, 9% of carers). We asked respondents to tell us what the effect of this was on support services offered or received (for better or worse).
There is no doubt that there is a different attitude to people with a personality disorder as compared with severe mental illness and this does affect both treatment and services.

'support services changed for the worse' (a service user)
'it had a terrible effect on treatment or rather non-treatment and non-admission to hospital in spite of very serious suicide attempts and a very vulnerable lifestyle. My daughter was open to all kinds of dangers. Later she was diagnosed as having schizophrenia/schizoaffective disorder'

Changes in diagnosis cause great puzzlement and distress when one individual is given successively diagnoses of perhaps drug-related psychosis, later schizophrenia, then manic depression, now schizoaffective disorder with bi-polar manifestations (euphoria/mania followed by deep depression). Both service users and informal carers need some explanation.
Personality disorder is a vague term and people are not clear how it is arrived at.

'staff initially did not listen properly to our description of our son's symptoms. He was first classified as having personality disorder. I firmly believe that there are many people in prison and community who have a range of illnesses and personality disorder and should be on anti-psychotic medication'