CWO Forum Report: Mental Health in the Community

North East Region CWO Forum Minutes

Held at the Northern Counties Club, Hood Street, Newcastle upon Tyne NE1 6LH 
on Wednesday 29th October 2014,
Chairman    Mrs Sylvia Leigh

Guest Speakers
Claire Batey and Barbara Dow                         Alzheimer’s and Dementia
Dr Kodimela Consultant Psychiatrist
Anne- Marie Norman                                       NIWE Eating Distress Service
Mr Stuart Dexter                                             CEO Tyneside Mind
Chairman’s opening remarks
Mrs Leigh extended a warm welcome to all those present, especially when the subject was such a difficult one to discuss. She also expressed her gratitude to those speakers who had stepped in at short notice. Mrs Leigh then listed the conditions that would be considered – dementia, depression, bi-polar, OCD, schizophrenia and eating disorders and how these are treated in the community. Mrs Leigh expressed her belief that many of us would know people who have or have had these disorders.
CLAIRE BATEY, Stakeholder Relations Officer, Alzheimer’s and Dementia Society. 
Ms Batey gave an overview of the work of the Alzheimer’s Society, the number of sufferers and their needs, provision of care and funding. Services provided by the Alzheimer’s and Dementia Society in the North East 65 staff cover Newcastle, Northumberland, Middlesbrough and Co. Durham. Help is provided in the form of support for carers, dementia cafes, one–to-one support and the work with the family and carers.  

Alzheimer’s and Dementia Society Report, 2014
This gives the most comprehensive picture of how many dementia sufferers there are currently in the UK – 850,000.

Types of dementia
The term ‘dementia’ covers a collection of symptoms. There are over 100 different types of dementia, all of which progress differently.

Funding for dementia sufferers
While there are many more dementia sufferers than people with cancer, funding for cancer patients is considerably higher - £26bn per annum. In addition, the cost to carers who are often unpaid is often not recognised.

Prevalence of dementia in the North East
There are 34,000 people with dementia in the North East as a whole, with 19,000 in Northumbria, 6000 in Co. Durham and 19,000 in Northumbria and Tyne and Wear. This is because the North East has an ageing population.   

The health of people with dementia
According to the report published in 2014, 61% of sufferers are depressed and/or anxious and 40% feel lonely. A third of people live alone, and over one third of those are visited less than once a week, with some visited less than once a month. 28% are not able to make decisions about how they spend their time. The condition affects everybody differently and 70% live with another condition. 34% do not feel part of the community. Dementia friendly communities like Corbridge are needed.

What the government could do to improve matters
£11bn is lost to the economy through unpaid carers: paid support needs to be provided. 52% of carers feel that they
do not get enough support from the government. The government has, however, given some welcome support with the Prime
Minister’s Challenge Fund for primary care, but unfortunately the Dementia Strategy has now expired.

What actions are needed?
DIAGNOSIS – less than 50% of people are diagnosed. Needs to increase to 75% by 2017.
CARE NEEDS TO BE INTEGRATED WITH HEALTH CARE - currently most of care needs are met from the social care system.
DEMENTIA FRIENDLY COMMUNITIES – businesses, employers.
RESEARCH - funding has been increased but still receives seven times less than cancer.  Funding is needed for research into how people can live with this disease.
BARBARA DOW – Volunteer for the Alzheimer’s and Dementia Society
Mrs Dow, cared for her husband who suffered from dementia. She began by stating, “Look at the person before you look at the disease.” She recounted how his illness affected him, how he coped, what others did to help him, and the type of care he received.

Alastair Dow was an RAF pilot who had a happy life, and on retirement worked in a flight simulator. He was diagnosed with prostate cancer but coped well with having radiotherapy treatment. Mrs Dow said that often Alzheimer’s patients suffer from another disease. The onset of Alzheimer’s disease was gradual. Initially his memory became poorer, then one day he came
home in the wrong coat and so on. 

Mrs Dow stressed that early diagnosis was very important as it enabled the sufferer to make the decisions that need
to be made about such matters as financial arrangements and wills so that the person can be given dignity. She reflected that regrettably, in the past, this was not always the case and GPs may not have taken note or recognised the symptoms, but nowadays they are much more aware. 

In Alastair’s case he was able to take part in the decision to move further north, choose a new house and its location. For two years the medication he received enabled him to continue ballroom dancing, and then his world gradually began to shrink. He gave up dancing when he could no longer remember the sequences. He joined a gym, however gave that up when he could no longer cope. His world shrank further when he could no longer cope with the conversation at dinner. Mrs Dow commented that to relieve loneliness it is important to have visits from friends. She also suggested doing simple activities that help the sufferer recall memories.

As Alastair’s illness progressed he developed urinary incontinence which meant that Mrs Dow was working 24 hours a day. Mrs Dow pointed out that there is no use in in becoming cross with people who do not know what they have done. Her husband went into a care home where his behaviour became so challenging that he was sectioned under the Mental Health Act. This resulted in his being admitted into a hospital. 

Mrs Dow said that she was very dissatisfied with the care provided by the hospital. Alastair had falls etc. and he was moved from one ward to another. The nurse ratio was 1:24 which meant that there was no time to change patients. She felt that Alastair was treated with a lack of humanity. To try to improve the care of dementia patients in hospital, Mrs Dow wrote a little booklet for doctors and nurses. She produced it with the help of the Dementia Support Group and it took four years to complete and publish it. The title of the booklet is “This is me”. She recommends that all carers complete the booklet and place it at the bottom of the bed. It is not a medical document: it gives information about what makes the patient happy or distressed and also gives details about their previous life. The aim of “This is me” is to encourage medical staff to see the person before they see the illness.

Mrs Dow concluded by saying that she and her husband had a happy life together and she expressed her belief that what people who suffer from Alzheimer’s disease need most is to feel happy and safe. She hoped that by giving us a glimpse of Alastair we will understand what it is like to live with Alzheimer’s.

Questions/points from the floor and speakers’ responses
  • - In response to a person who felt that nurses had been unaware of her mother’s needs, it was pointed out that nowadays
  • the Patient Advice and Liaison Service (PALS) is available to give advice to relatives and patients. Nurses are better
  • trained to care for patients with dementia. 
  • - Several people had used “This is me” and considered it to have helped improve care for dementia sufferers. One person also recommended “Dementia Essentials” by Jan Hall.
  • - The view was expressed that although care homes had received a lot of bad press it was better to be in a care home than
  • be alone at home. It was agreed that in a care home with EMI (Elderly Mentally Infirm) units, staff have much more awareness. 
  • - It was considered that early diagnosis can help the dementia sufferer to choose the care home themselves and make an informed decision.
  • - It was suggested that having dementia specialists in G.P. practices would lead to earlier diagnoses. The speakers considered that this was now the aim and that probably this will happen. 
DR KODIMELA – Consultant Psychiatrist, St George’s Hospital Morpeth
Dr Kodimela explained that she works mainly in the community in Cramlington, and with the crisis team in Northumberland. She treats patients who are over the age of 18. She stated that while mental health problems account for 23% of illness and the cost to the economy is around £100bn, spending in this area is very little. Dr Mela then described various mental health problems and how they are treated. 

One in five people will suffer from depression which is very difficult to shake off. It affects sleep, appetite (eating less/more), concentration, reduces enjoyment of activities, reduces motivation and the ability to make decisions. Sufferers may feel a sense of hopelessness and become suicidal, want to go to sleep and not wake up. 

To show that mental illness can seriously affect the family of suffers, Dr Kodimela gave the example of ‘John’, a married man with two teenage children, who became very depressed when he became redundant. He had to apply for benefits and found this very demoralising. He was prescribed anti-depressants. One day he repeatedly phoned his wife to ask when she was coming home from work. She stopped off on the way home to buy pizzas, phoning  ‘John’ to ask what kind he would like. When she arrived home she discovered that he had hanged himself. This greatly affected his wife and children. 

Dr Kodimela explained how depression is treated. In Mild to moderate cases counselling is offered, while more serious cases are referred to a consultant and they may be given anti-depressants. She stated that the outcome often depends on self-help and the support of family members.

Bi-polar disease
The sufferer is hyper active, needs little sleep and has inflated self-belief. Mood stabilizers are prescribed.

Sufferers from schizophrenia do not have a split personality and most are not violent.  They have difficulty with thinking and with their behaviour. They may have auditory hallucinations, believe things that are not true, have difficulty in concentrating, may lack motivation, stop caring for themselves and they may harm themselves or others. Schizophrenia is treated with medication.

The sufferer has obsessive thoughts which they cannot stop. They develop compulsive behaviour in an attempt to ward off their obsessive thoughts or fears. Sufferers are often not diagnosed as they may try to help themselves.  

Generalised Anxiety Disorder
This has physical symptoms. There is a fight or flight response all the time. The sufferer may not be able to leave home and so they become house bound. 

Dr Kodimela said that one of the differences between physical and mental health problems is that with physical problems there is something to check whereas with a mental health problem there is nothing to check. There is also a lot of stigma surrounding mental illness.  

Dr Kodimela then summed up the treatment of mental illnesses in general. There is the medical approach involving anti-depressants, anti-psychosis medication and mood stabilizers. There is also the psychological approach of talking therapies where unhelpful thoughts are challenged. She also mentioned that people may try to help themselves by using alcohol and drugs. She went on to say that it can be difficult to motivate sufferers so small goals are set, using one step at a time. Family members also need to understand and should talk to the doctor, read leaflets etc. 

When seeking help the primary contact is the G.P. who will refer the sufferer to the mental health services. Medication may be offered and community health workers or occupational therapists may be involved. Occasionally a person may be sectioned if they are at risk to themselves or others. They may need more help than they want, so will be admitted to hospital. Multi-disciplinary mental health teams are also available 24/7 to treat a person at home, perhaps visiting twice a day. 

Dr Kodimela again stressed the importance of family support in the success of treatment and the prevention of a relapse by being aware of the signs of a relapse. The signs of relapse are becoming withdrawn and, taking refuge in sleep. Awareness is necessary so that treatment is sought early. For a person to recover it is also necessary for them to connect with other people. They should help others, engage in hobbies and set themselves goals. 

Questions from the floor
Q. How long does it take to see a counsellor?
A. A scheme has now been set up that has improved access to psychological therapy. Help is now much quicker
Q. How can I support somebody who has a mental health problem? Can I go to a doctor?
A. Confidentiality means that the person must go to the doctor themselves but most people agree to a family member being involved.
Dr Kodimela concluded by recommending the following websites:
- Royal College of Psychiatrists
Anne-Marie Norman – NIWE Eating Distress Service
Anne-Marie introduced herself as a founder member of NIWE.  She has worked in the field of eating distress for 26 years and is also an art therapist. She explained that ‘NIWE’ (The Northern Initiative on Women and Eating) was established to help women who had issues about eating. The name was changed because children, young people and men also ask for help. It was also decided that ‘distress’ described the situation better than ‘disorder’.

The people who seek help from NIWE may or may not have been to see their G.P.  Often it is the first port of call for themselves or they may contact the service for somebody they care for. People may not have wanted to tell anyone about their eating problem or they may have been directed by their G.P. or have found the website. Somebody may have struggled with their problem for months, years or even decades without being diagnosed, or the help they have been given may not have been appropriate so they may have taken fright and tried to struggle on alone. 

Anne-Marie explained that NIWE has offered group therapy for over 25 years. Groups include a ‘Recovery’ group and a ‘Stay Well’ group which was founded by somebody who had benefited from treatment. Yoga, art and ‘Managing anxiety’ sessions are also offered. NIWE is a regional organisation that has a contract for Northumbria and North Tyneside. Other areas are supported by charitable trusts and raise their own funds.  

Anne-Marie said that 25 years ago there was little to help those with eating distress and help is still patchy across the country. NIWE does, however, direct people in other areas to local services, suggest leaflets and gives advice on how to talk to their G.P. One of the aims of NIWE is to raise awareness and it was suggested that we should try to raise awareness ourselves. Anne-Marie emphasised that an eating disorder is an illness that can be treated and that it is possible to recover. She also stated that there are many myths about eating distress, particularly that it is a condition confined to young middle class women who want to look good. The reality is that it affects men, and people of all ages and backgrounds, including children. 

Anne-Marie described the symptoms of the different eating disorders: 
- Anorexia nervosa – change in eating patterns and considerable weight loss.
- Bulimia nervosa – normal weight is maintained but there is binge eating followed by expulsion and periods of restricted eating. The sufferer may also exercise compulsively. 
- Binge eating disorder – compulsive overeating that is not followed by compensatory expulsion.

Anne-Marie explained that emotional issues underlie all eating disorders. Triggers may be bereavement, divorce,
sexual abuse, disturbed relationships, being bullied at school about size and concerns about body image.  It may also be learned behaviour. An eating disorder is a secret, hidden illness where the sufferer is trying to manage emotional problems by themselves. 

Anne-Marie drew attention to a national charity, BEAT (Beat Eating Disorders) that gives advice and directs people to help they can receive locally. She emphasised, however, that the first person to contact should be a G.P. She concluded by informing  us that the recent campaign to keep hospital beds for eating disorders in the North East has been successful which means that there is a stable team of experts to care for those who need treatment. 

Questions from the floor
Q. Has there been any research into whether what we eat during our lifetime can affect whether we develop dementia?
A. The general advice is ‘What is good for the heart is good for the head.’
Q. Do people in their 70s and 80s have eating disorders?
A. This is a neglected area. Elderly people may become depressed and focus on their weight. They may also become vulnerable to the plethora of health messages in the media. More people with eating disorders are women. 
Stuart Dexter – CEO Tyneside Mind
Mr Dexter explained that Mind is a federation of 148 separate charities. Tyneside Mind - originally Blaydon Mind - was founded 25 years ago. As a result, there are now counselling services in every GP surgery in Gateshead and also in some practices in South Shields. The charity offers one-to-one support, group work and activities to develop skills
such as cooking. 

The charity also provides services for young people. Nearly half of mental health problems start in childhood and schools now provide counselling services. Mr Dexter explained that a particularly vulnerable age group is 18-24 year olds who in terms of care fall between child and adult. This group is affected by socio-economic factors such as unemployment or university graduates not getting the jobs they expected. The lottery funded ‘Talent Match’ programme, supported by a team of mental health workers, has been developed to help people in this age group who are not in education, employment or training (NEETS). 

As an example of how Tyneside Mind helps young people we were told about a 21 year old man who was thrown out of his parent’s house and lived in a tent with no cooking facilities. He had poor mental health and hygiene problems. The charity bought him a pay-as-you-go mobile phone to help him keep in contact. 

Mr Dexter continued by speaking about self-harm, a pattern of behaviour that can develop. He commented that perhaps the media has made this appear normal and he considered that the internet has spread this misconception. People can also copy the methods of self-harm that are detailed on the internet and he gave the example of Robin Williams. Tyneside Mind aims to help people to help themselves by using the four principles of Well-being, Recovery, Resilience, and Prevention.

Mr Dexter concluded by considering the future. He considered that the lack of parity of esteem between physical health
and mental health needs to be addressed. Currently one in four adults and one in ten children have mental health problems. These are only those who have been diagnosed and there will be many others who have not been diagnosed. He lamented that only 1.1% of the health budget is spent on mental health problems yet mental health and physical health are interdependent. He maintained that the lifespan of a person with mental health problems will be 20 years shorter. 

He considered that the gap between adult and children’s services also needs to be addressed: a counselling service is needed in all schools. He noted though that staff have an increased understanding of what is motivating young people with mental health problems. Mr Dexter concluded by stating, ‘If you can’t get most of life right, you can’t
sort out mental health problems.’
Questions/points from the floor
Q. Do you think that if mental health had parity of esteem people would be willing to admit to having a mental illness?
A. Attitudes do change. In the past people didn’t talk about cancer. 
Q. How much do genetics influence mental health?
A. It is more a matter of family environment. It is possible there may be a chemical imbalance, though. 
P. Regarding stigma. In the North East people take to drink rather than seek help. Incidentally, there is a counsellor in every school in Wales.
Q. How is Tyneside Mind funded?
A. Currently 45% is from public funds.
Q. Drugs-do they cause or help with mental health problems?
A. Long term cannabis use does have a detrimental effect.  People use comfort eating etc. Drug use may be less than young people claim. 
Q. Can family break-up cause mental health problems?
A. It’s a lack of caring parents rather than family break-up itself. It can result in homelessness for young people. They can seek help from CAMHS (Child and Adolescent Mental Health Services) but parents are required to attend which can be a problem. 
Q. Are many young people with a mental health background from a social services background? Have they previously been in care?
A. This is part of the problem. They have not been prepared to be an adult. 
The vote of thanks was given.

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Tel: (020) 7984 8139