Deciding Together Deaflink Focus Group feedback.

Date of Focus Group: 2nd February 2015 at 3pm.

Attended; 6 Deaf British Sign Language (BSL) users, 5 of which are current patients

of the Specialist Mental Health & Deafness Service in the Northern region and one

deaf person was a patient and is now a volunteer with the group. Participants were

made up of 5 Women and 1 Man. Also attended by Rhona Stanbury Strategic

Coordinator of Deaflink (Qualified BSL Interpreter) who gave support facilitating the

group.

Venue; Deaflink office base at Room 2 Skills for People, Tankerville Terrace,

Jesmond, Newcastle upon Tyne.

Themes discussed were Part 1 and Part 6.

Part One: Improving specialist community mental health services outside of

hospital.

Responses

Q1: The general consensus from the group was that they would contact Joyce

Pennington (Clinical Nurse specialist Mental Health & Deafness at NTW) via SMS.

“When I first attended my GP not feeling well he did not know what to do as I am

deaf. The BSL Interpreter at that appointment knew of the special service for deaf

provided by Joyce Pennington so the GP knew where to send me”.

Discussion followed if Joyce Pennington was not there where would deaf people go?

Two would go direct to their GP with an interpreter for a referral to the

specialist service.

One would go via NHS Direct email .One had the SMS number of the Crisis

Team which was given to her by the specialist Psychiatrist for the Deaf.

One would go direct to the hospital mental health service. There was

uncertainty regarding the provision of Interpreters with a CPN who did not

understand their needs, their language and culture.

One felt there also needed to be a consistency in the use of the same

interpreter for each appointment who was familiar with their background.

The group expressed the fact that there is a grave lack of services for deaf people

where professionals have no understanding of their culture and language and they

felt at risk of mis-diagnosis without that specialist knowledge.

Q2: Would it be helpful if you could access mental health services at

weekends? What services would you want to see included?

All agreed it would be helpful to have mental health services accessible at

weekends, as GP’s are closed. 24/7 would be ideal.

Issue is getting an interpreter in an emergency would be difficult.

One did not want to rely on her husband to get her to services she would

prefer a venue where she could go independently.

The use of Intercoms are not helpful for deaf people to gain access to

buildings.

“Staff also need to learn deaf awareness and some sign language”.

“Good for all professionals working with me have the same information so not

repeat myself”.

Q3: What are your views about psychological therapies……………….?

“Not enough specialist counsellors for deaf people who can sign and are deaf

culture aware”.

“Delays in getting specialist counsellors as they live far away”.

There is always issues regarding funding interpreters.

“Some Deaf people prefer Deaf counsellor or one to one in BSL and there is

nothing in North East of England. They have IAPT (Improving Access to

Psychological Therapies) for Deaf people in North West of England, when

Deaf person want this service and NHS can't provide because no

funding. Where Deaf rights and some Deaf people don't want to use BSL

interpreter and where Deaf people's choice.”

“With different therapies deaf people need more time and attention”.

“Group work difficult with hearing patients as they chat and I felt left out”.

“Deaflink Wellbeing group is good benefit to us as we are all the same deaf

background and can sign to each other. The deaf community small so good to

have group which is confidential. We fit in here”.

Q4: What information or support might help you to take more control?

“We would like an information pack in DVD BSL format giving practical

support such as how to breathe to calm down, ideas to get us feeling better”.

“The Deaflink Wellbeing group support one another in the group”.

“Leaflets are not accessible as BSL our first language need DVD”.

“Don’t know who to trust as there not enough people who can sign”.

Q5: How can we best help young people make a transition to adult services/

“Youth clubs/Schools/ Colleges need training re mental health”.

“Good to have relationship with a young mentor”.

“Have good role models help young to express feelings”.

PART 6: Transport and Travel

Q12:

“Need local access for Deaf people. If not they may refuse to travel if too far”.

“In patient service for deaf people in Manchester, Birmingham, London, Bury,

Nottingham .Too far for family visit. Need one in the North East”.

“Need to rely on someone else for help with transport if far away”.

February 3rd 2015

Equity Monitoring Form to follow after 16th Feb.

Deciding Together focus group 4pm-6pm 11th February 2015 Crisis Skylight Newcastle

Attended: 14 service users

PART ONE: Improving specialist community mental health services (services outside of hospital) Q1: How would you prefer to get in touch with specialist mental health services? How can we ensure there is easy access for service users and carers?

GP first contact

Phone numbers you can ring, not through GP

Being told about services before you end up in hospital

Information;

web sites

library

leaflets

posters in the library

Education (Schools) Drug and alcohol awareness

Interventions in schools

Teacher training to raise awareness

Dedicated mental health nurse attending schools

Support for nurses

Address stigma, encourage positive attitudes towards positive mental health

Do mindfulness with students

Educate peers

Have mental health support in universities

More information leaflets in doctor’s waiting rooms Q2: Would it be helpful if you could access mental health services at the weekend or in the evening? What services would you want to see included?

Weekend / Public holiday support essential

Telephone

24hr helpline, text, email

Call out consultant available

NHS helpline to direct to services

Informing people about voluntary services

Info in doctors’ surgeries

More accessible self-help resources

More training for GPs in mental health

Awareness of when to use different services

Reassurance for parents from Social Services that it is OK to ask for help Q3: What are your views about any psychological therapies you may have received through community mental health teams?

Less use of locums

More awareness about long term effects of prescription drugs

Lead time before accessing psychiatric help appointment too long

Longer sessions & support

More lobbying of MPs

Should be less of a stigma attached to mental health issues

More support needed for family members of mentally ill patients

CBT has been helpful, if delivered by a good worker

Should be easier to change your worker if you don’t get on with them

Different ways to access, everyone is different

Range of options, e.g. creative writing groups

Most people just want someone to talk to

Give people tools they can use themselves

Look at the underlying issues Q4: What information or support might help you to take more control?

Access to an impartial party to represent patient / staff legally

Books. Audio books. Youtube.

Support at University

Less focus on safeguarding, more on what the person needs

NHS staff having good mental health themselves – think about the wellbeing of staff, let them have duvet days

Recommended books and websites Q5: How can we best help young people to make the transition to adult services?

Family / mentor education

Families need more information

Trained psychologist in schools

Access to an impartial mentor

Overlap – don’t change the provider

Phase one into the other

Case meeting

Reduce jargon

Better connections with social services

Single point of contact – properly resourced

Everyone understanding the system

Encourage thinking about positive mental health

I want to be able to get direct contact to a person who could help otherwise I just feel it is a silent scream

PART TWO: Potentially relocating the adult in-patient units in Gateshead and Newcastle and reducing inpatient numbers overall Q6: What is most important to you about in-patient services?

More control of people entering facility to check for drug & alcohol

Increased vetting of staff, more background checks

Random inspections

Feel secure

Some people feel it’s happened too late. Felt unsafe, but couldn’t access hospital

Being sectioned feels like a failure, on my part and of services. Staff don’t empathise.

Offer alternatives – other places you can be

Safe social option. Change of environment might help mental health

Need community support

Need to feel involved in the process

Ask the individual what they want

Address attitudes in A&E

The Tom Carpenter Centre and the old Newcastle Clubhouse are a big miss. Now people spend their time going from coffee shop to coffee shop. Some people who used to go there have killed themselves.

Q7: How much do you value the environment for in-patient care?

Security

Feeling safe

Privacy, locks on doors

Private rooms

Less dormitory accommodation

More activities to keep patients occupied

Not too clinical

Relaxing

Safe outside area

Natural light

Go for walks

Don’t disrupt sleep – it’s really important

Consideration to who you put together to share Q8: How much do you value services being locally based?

Very important for family support

Parking permits for visitors

Very important

Family and friends can visit – really makes a difference

Can’t afford travel if it’s far away

Connected to community and support network PART THREE: Ensuring a place of safety – section 136 suites Q9: If you have experience of the section 136 suite in Newcastle or Gateshead, what would be your priority for improvement?

Police should be given psychology training

More professional support for patient & police

Patient access to higher authority with family members support

Check people can’t get out (example given of person who installed the security systems being sectioned, and letting themselves out)

Not a police cell

Treat people with respect and dignity

Consider whether helping someone get home is better

Try not to frighten people. Help them feel safe PART FOUR: Services for people with especially complex mental health needs Q10: How do you think we can support people who use these services – and their families – more effectively?

Volunteer organisations to be involved with rehabilitation

More support at home in a family friendly environment

Refresher courses for psychiatric staff

Consider using voluntary sector services more than private sector contractors

Learn from the voluntary sector – they naturally have to be efficient as they don’t have much money

Don’t see it as failure if you refer to voluntary services

Better awareness of voluntary services

Shift in how we value people – contribution to society rather than financial contribution. Positive campaigns

PART FIVE: Specialist mental health services for older people Q11: Have you or your family used any of these services in Newcastle?

No

Q12: Have you had good or bad experiences of these services? Could they be improved?

No comments PART SIX: Transport and travel Q13: If services were to change, how far do you think it is appropriate to travel to an in-patient service?

Concessions for public transport, family members can be on low incomes / benefits

10 miles

Number of bus / train changes required

Facilities need to be as local as possible

Drug and alcohol rehab should be as far away as possible

No more than two buses, at least one of those being a short trip – reduce cost, could get lost

When you get leave you don’t want to have to travel too far to go home

Distance gives people an excuse not to visit you

Need community

Mixed views on whether we would travel further for a better service. Depends on the individual

What does ‘better’ mean? More, better staff is more important than fixtures and fittings

Additional comments

There should be limits on how many hours can be worked by NHS staff

More effort / incentives to recruit mental health staff

More CPN involvement

More CPN appointments available

There isn’t room to reduce the number of beds, we need more not less. People will always need and want beds.

Restructure and address the demand before making cuts

Way up the costs of not addressing mental health – increased productivity, physical health problems

Deciding Together Consultation

Notes from Carer Focus Group

4th February 2015

Number of carers attending 5

PART ONE: Improving specialist community mental health services (services

outside of hospital)

The Northumberland, Tyne and Wear NHS Foundation Trust (known as NTW) is

working to improve specialist community services within the current budget.

Introduction to the question: Some people have said that it can be difficult to

access specialist mental health services. This can be when you have been referred

by your GP or when you are in crisis.

Q1: How would you prefer to get in touch with specialist mental health services?

How can we ensure there is easy access for service users and carers?

Prompts:

Is it clear who you should contact…

-If you have not used specialist mental health services before?

-If you have used specialist mental health services before or are currently using

them?

Would it be easier if there was a single front door for all mental health

services, or if there was an ‘any door is right’ approach, with all services

responsible to get you to the right service for your needs?

Comments

GPs are one way in

GPs don’t always know who to contact e.g. Crisis team

Crisis team gave supportive chat but wouldn’t come out and didn’t reply on

MH specialists needed at A&E

Self-referred by physically presenting at in patient ward.

Services not connected up – waiting lists for talking therapies are too long

It is wrong for police to be away into services

More connection between services is needed

When you care for someone who is ill there is little information

GPs need more training to recognise ill health conditions

Carers are expected to cope without being told what to expect, no explanation

of diagnosis, no information about medication or about recovery.

It is hard to get a quick/ early appointment with a GP

All services should be aware of all the other relevant services and be able to

support engagement with them.

Confidentiality is often misused to prevent information that is needed for

safety being given to carers.

Carers are often not recognised or listened to by a range of MH practitioners-

side-lined.

Lack of clarity of role of crisis team.

Carers are not asked about their own wellbeing or support needs- very rarely

told about carer’s assessment.

No clear information available to carers about services.

Crisis team understaffed and reluctant to restrain ill.

Introduction to question: NTW is working to reduce bureaucracy and increase the

amount of time that can be spent face to face with patients.

Q2: Would it be helpful if you could access mental health services at the weekend or

in the evening? What services would you want to see included?

Comments

Time would be freed up and saved if they (mental health services staff)

listened more to carers.

Use of technology which saved time will be lost by community practitioners

having to travel between St. Georges Park and Hopewood Park.

Extended access would be an improvement- 9 to 5 works for some services if

there is no waiting list.

Psychosis services should be 24/7

More staff time should be spent with patients rather than on computers.

Clozapine clinic needs to be 24/7

Introduction to questions: NTW is training staff so that patients can get quicker

access to a wider range of therapies and treatment options.

Q3: What are your views about any psychological therapies you may have received

through community mental health teams?

Psychological therapies are routinely denied to severely ill people against

NICE guidelines despite carer suggestion

Primary care CBT was very helpful to one ill person- carer satisfied at

improvement.

Carer feeds that psycho therapies are not appropriate for severely ill people

who will still need a bed.

Introduction to question: We want service user and carers to have access to

information and support, so that you can take control of the treatments you use.

Q4: What information or support might help you to take more control?

Comments

Appropriate use of confidentiality- improved staff awareness of ……..

Confidentiality.

Written care plans prepared with appropriate carer involvement.

Carers report absence of care planning and where there is a care plan they

are not involved in it as its review.

Full implementation of the triangle of care.

Compliance with the carers character

Being offered a carer assessment

Being told/put in touch with PALS

Being told to be put in touch with independent carer advocacy service

Being told about local MH carers support

Information o0n carers centre

Q5: How can we best help young people to make the transition to adult services?

Comments

Gradual change over practitioner. Gentle supported engagement

Seamless services- sometimes young people’s services stop and there is a

gap until new staff become engaged.

PART TWO: potentially relocating the adult in-patient units in Gateshead and

Newcastle

In-patient services, for people with higher levels of need, are currently provided at

the Tranwell unit (at the Queen Elizabeth Hospital) and the Hadrian Clinic (at

Newcastle General). These services are recognised for quality of care, but the

buildings are not up to modern standards.

Q6: What is most important to you about in-patient services?

Prompts:

So far people have told us:

Well trained staff

Compassionate staff

Dignity and respect

Getting well quickly

Close to home (so carers can visit)

Good environment

Feeling safe

Public transport (costs and time)

Comments

All of the above are important but good quality of service and nearness to

home are paramount for carers (service users)

Collaborative care is vital

Contact (regular and frequent) with families and carers is vital for recovery

(royal college of psychiatrist recognise this –Triangle of Care needs to be

properly implemented, as no NICE guidelines.

Tranwell is not secure

In-patients need to be in regular contact and not out of sight miles away

In-patients need to have flexible option to be visited on net.

Q7: How much do you value the environment for in-patient care?

Comments

En suite not as important a concern as warmth and comfort

Environment needs to be more family friendly with support for carers.

Smoking areas should be provided (outside of wards)

Q8: How much do you value services being locally based?

Comments

Vital-see Q6

Essential for carer engagement

Important for home leave

Important for patient recovery

Helps to address stigma

In patients should not be parked out of sight and away from their community.

PART THREE: Ensuring a place of safety-section 136 suites

We would like to consider the best arrangements for ‘section 136 suites’, which

provide a ‘place of safety’, for example if someone is posing a risk to themselves.

Some areas now operate ‘street triage’ teams, who work with the police to provide

support and reduce the number of 136 detentions.

Q9: If you have experience of the section136 suite in Newcastle or Gateshead, what

would be your priority for improvement?

Comments

Maintain street triage service in the future- cells are no place for deluded or

vulnerable people or even those affected by substance misuse while ill.

If this police/MH practitioner co-operation could also take place in domestic

situations (as when crisis team won’t come out for fear of violence). Carers

are reluctant to call police, but would feel better about a team with MH

practitioner involved.

PART FOUR: services for people with especially complex mental health needs

Some services exist to meet the complex and specialist needs of a small number of

people. These include the psychiatric intensive care, high dependency, complex care

and moving on units, and the community rehabilitation service.

Q10: how do you think we can support people who use these services- and their

families- more effectively?

Prompts:

Seamless progression through services?

Moving to a community setting

NHS linking with voluntary sector organisations

Comments

Moving on units should be near where people live (see Royal College

Psychiatrists)

More support for carers and families with gradual return to home environment

It should not be assumed that carers will be able to cope with family member

returning –they need to be asked.

Ensure that all services are adequately staffed and appropriately trained.

Continued support for carers and family through service progression.

Adequately provision of services in response to need (clinical).

Therapeutic optimism- people moving from high dependency through

progression is better with change of site- ward to community setting.

Converse opinion- if all on same site relapse is more easily dealt with.

Both above agree that services should be more local

Clinical staff need better knowledge of what I available locally from local

voluntary sector/third sector-which needs adequate funding and

commissioned support.

Seamless progression is hampered by homelessness, lack of benefits and

community support. Resulting in delayed discharge of homeless people.

NOT APPLICABLE

PART FIVE: Specialist mental health services for older people (Newcastle only)

In Newcastle, services for older people include in-patient wards (both for older or frail

people with a mental health problem and assessment/treatment for people with

dementia).

(Services in Gateshead are provided by a different health trust).

Q11: Have you or your family used any of these services in Newcastle?

NOT APPLICABLE

Q12: Have you had good or bad experiences of these services? Could they be

improved?

Prompts:

Well trained staff

Dignity and respect

Close to home (so carers can visit)

Good environment

Feeling safe

Close to your community (to support discharge)

Getting timely help

Quality space

Flexible to patient needs

Living independently where possible

Comments

Not applicable

PART SIX:

Transport and Travel

Most services and delivered in communities, but sometimes people may need in-

patient care. This is currently provided in Gateshead and Newcastle.

Q13: If services were to change, how far do you think it is appropriate to travel to an

in-patient service?

Prompts:

Would you travel further for better facilities?

Would you like better services in your area?

How far have you or your family travelled to wards in the past?

What are your experiences of transport to in-patients wards?

Comments

As local as possible

No further than physically ill people travel for in-patient services.

The further the distance the greater expense and demands on time for in

patients and carers. In frequent visits can hamper recovery. Distance can

make home leave more difficult.

The booklet implies that all transport needs are currently being met by NTW

and this is not the case. Wards do not have budgets which will cover taxi fares

or reimburse public transport costs.

It is very stressful for carers with cars to navigate to Hopewood Park and St.

Georges Park if you live in Gateshead.

Making visiting more difficult is counter to the Triangle of Care.

Deciding Together – Focus Group Notes; Gateshead Interfaith Forum About Gateshead Interfaith Forum Gateshead Interfaith Forum (GIF) established in 1993 to tackle social inequality in Gateshead. Its aims are to address the social disadvantage that people from black and minority ethnic (BME) communities face in Gateshead. GIF is run by local trustees/ volunteers from mainly BME backgrounds, and is based in Bensham Grove Community Centre Bensham Bank Gateshead. The project has 5 strands: 1. Educational intervention work with youth offenders 2. School-based anti-discriminatory work 3. BME community data gathering 4. Anti-racism youth events 5. BME/Faith community involvement & engagement On behalf of the Newcastle and Gateshead alliance we carried out three focus groups concerning mental health for the deciding together consultation. The first consultation took place at the Muslim community centre Westbourne Avenue on Tuesday 13

th January 2015

10 attendees The second consultation took place on Monday 2 February 2015 with MEMCO Asian ladies group at Bensham road community centre 12 attendees The third consultation was with the Gateshead Visible Minority Support Group on Wednesday 4

th February 2015 9

attendees

The discussions at time was difficult due to the fact that it was difficult for the groups to see the difference between the different types of mental health. There were lots of comments and a lots of criticism which is fine because without this it would not be a balanced consultation. I have listed the comments in the same order as the questions 1 Very difficult to get in touch find it hard to discuss these issues with anyone All the information is in English on the posters in doctors The two GEVOC mental health workers have been sacked so who do we go to Mental health issues are kept within the community We are not taken seriously Tried to use the help line found it very difficult Why cant help be delivered in the community Use the mosque to get message across Have drop in session in our community 2 We can’t get access during the week so why would it be any different at weekends Must consider our religious duties

Are mental health issues only at the weekend? 3 Not sure what help is available Can any therapies be delivered at home We look after our own 4 What help is available in our language NHS staff has little understanding of our cultures Is the Tranwelll closing Help with filling out forms How do you know when somebody is mentally ill Use family as interpreters Train members of our own communities as health orkers 5 That’s your job Families don’t like to talk about children’s mental health

Give advice at school 6 Make sure books in different languages are available Respect our religion Halal food Understand culture Accommodation for family and friends Transport Train staff about our cultures

‘Deciding together’ group discussions facilitated by HAREF and supported by

bilingual workers, January 2015

Participants

24 people, 22 women and 2 men, took part in three separate group discussions: 8 in the first group,

6 in the second, and 10 in the third.

5 participants were in the 26-35 age range; 7 in the 36-45 range; 1 in the 46-55 range; 9 in the 56-65

range and 2 in the 66-75 range.

4 people identified themselves as a carer.

10 people described themselves as Chinese; 6 as central European (from Czech Republic and

Slovakia); 1 as Black African; 1 as Indian; and 6 as Pakistani.

The 14 participants who gave their postcode all live in the NE4 area of Newcastle.

Themes from group discussions

1. Being equipped to know when and how to contact services and use them effectively

Feedback across the three group discussions was that:

• people want to raise their awareness of the symptoms of mental ill health - “so that we know

what to look out for if someone is becoming ill. It would be very helpful if there was some training

for community members about mental illness and how to respond, with a refresher session every

year or so.”

• people need to know when and how to ask for help in advance of services being needed. The

importance of people having information before the need for service provision so that they, or

someone close to them, knows who to get in touch with, was illustrated by a woman in one of the

groups who has experienced suicidal feelings - “Sometimes I still hear voices saying negative things

and when those thoughts come I feel I want to end it. You need to know in advance what to do

when you feel like that. You never know when you’re going to feel worse though some things can

trigger it, like domestic violence and things to do with immigration status”. Another participant

talked about being in the centre of Newcastle with a friend and hearing voices - “It was like a blare

in my head. My friend brought me straight back from town and took me to (community

organisation that both of them use) and they made an emergency appointment with my GP”.

• access needs to be as easy as possible at the point of need.

2. Breaking down barriers

2a. People who are parents

People who are parenting without an extended family network, for example people who have

arrived in the UK seeking asylum, can struggle to find information and support:

• “It’s very hard when you have no family around you and you don’t know where to go and what to

do”.

Participants suggested that it is invaluable to be linked with community organisations, with whom

they can stay in touch and who can signpost to appropriate support.

Several participants highlighted the importance of professionals explaining ways of managing

medication to avoid side effects that get in the way of day to day life as a parent:

• “I am on my own with my children and it’s difficult to get going in the morning and I sometimes

feel dizzy. I feel tired and more down. I go to bed at 5 or 6pm and take my tablets all at once to be

able to get up to take the children to school.”

Similarly there was reference to the importance of professionals outlining lines of responsibility eg

duty of care to dependent children of people experiencing mental ill health, and ways of working

with the person who is ill to explore best outcomes, to build trust and avoid situations in which

people are frightened to share how they are feeling:

• “My children are my life. Some doctors are scaring me away because when I explain what I’m

going through they say “How can you cope?”. I am worried that they will take my children away.

Fear gets in the way of me saying how I feel.”

2b. People who are in a minority within service settings

It is important that service providers are welcoming and support interaction with others as

appropriate:

• “Some people find it quite daunting to be in hospital and to be the only one not from the majority

population. If you put someone in that situation they often feel isolated and worse than before.

The staff really supported me to start to interact with other people in the place and that helped.”

2c. People with a first language other than English

It is important that service providers sensitively check out whether people need support to

negotiate services, and if yes, which language/dialect:

• “Sometimes you might really need to see a doctor and If you can’t explain things it’s difficult.”

• “Services need to think about language support. We really appreciate good interpreting.”

• “They need to properly match people in terms of their language needs. Sometimes a mainland

Chinese interpreter will be booked, even though the majority of people in the Newcastle Chinese

community speak Cantonese or Hakka. And although most people who speak Hakka can speak

Cantonese it’s not necessarily the same the other way round. Services need to double check.”

2d. People affected by the stigma of mental illness

Stigma was mentioned in all of the group discussions as a potential barrier to using services. While

this is a barrier affecting people across both majority and minority ethnic communities, the

combination of stigma with some or all of the barriers highlighted above can complicate access to,

and effective use of, services:

• “Stigma is very strong within the community and people don’t want others to know they have a

mental illness. This stops people getting help when they need it.”

3. Managing distance between home and service provision

22 of 24 participants expressed the view that specialist services should be provided somewhere in

the city (Newcastle), because of the importance of not becoming isolated from support networks,

for example:

• “If it’s in Newcastle it would be easier for family to visit.”

• “If it’s in Newcastle that’s manageable because it’s not too big a city.”

Two participants suggested that urgency of need for care would outweigh travel distance:

• “If it is necessary people will be happy to travel.”

• “It wouldn’t matter how far if people needed help desperately.”

However, while a small number of people across the three groups said that they have a car, and

some said that they can afford to use public transport, a third (8) of participants highlighted practical

issues related to travelling long distances, namely cost, for people with low income, and time,

particularly for people with family responsibilities and no private form of transport:

• “It can be difficult to get to towns outside of Newcastle by bus. If you miss the bus you have to

wait another hour.”

• “The bus fare is expensive and some people would not be able to afford to visit.”

4. Services linking with voluntary and community sector organisations

In all of the group discussions there was reference to the importance of what one person called “the

invisible network” of support provided by voluntary and community sector organisations. This

network provides access to information about symptoms of mental ill health and who to contact if

needed:

• “We feel comfortable in the women’s group and it’s easier to take in information.”

Several examples were given of invaluable support provided by workers in community and voluntary

sector organisations, and also of positive and productive liaison/working links between them and

Newcastle specialist mental health teams:

• “A worker from (local community development organisation) came with me and that was very

important to actually get me there.”

• “I was sectioned and the worker from (community organisation) visited me by public transport and

kept support going by telephone in between visits.”

However a bilingual worker supporting one of the group discussions commented that recognition of

the value of working together needs to be embedded within the culture of statutory sector

organisations providing specialist mental health services, rather than reliance on the initiative and

commitment of one or two individual workers.

5. Experience of service provision

Things that people across the three group discussions said that they particularly value are:

• professionals having a friendly, respectful, non-judgmental approach

• professionals’ capacity to be patient

• a caring approach

• good communication skills

• evidence of good quality training

• professionals understanding dynamics of domestic violence within different cultural

contexts, and the impact on women’s mental health

• a clean, bright environment

• food that meets the needs of a range of people

• support for people across the range of faith positions eg to pray while in-patient.

Feedback about specialist mental health professionals was generally very positive as

illustrated below:

• “The psychiatrist really listened and gave me a plan, a structure, and a review time.”

• “I really like how the doctor talks to me and how she tries to understand me.”

• “They put things in a way that you can understand so you can fall back on that if you have any

problem.”

• “I had excellent care when I was an inpatient. The staff were always checking on me in a way that

felt caring. and the occupational therapy group work was very good.”

• “It feels as though staff are well prepared now to support people to practice their faith while they

are in-patient.”

Deciding Together Focus Group

1.30pm Tuesday 10th February 2015 at Newcastle Carers

Participants = 10 carers

Equalities information:

Age: 36-45 years = 1 46-55 years = 3 56-65 years = 3 66-75 years = 3

Ethnicity: white =10

Disability or long term health condition: Yes = 5 No = 5

Gender: Male = 4 Female = 6

1. Improving Community Mental Health services

Overall, supporting carers was seen as an essential and cost effective part of a

preventative approach.

Improving communication with and support for carers:

Maintaining the Crisis Team is essential for carers. Carers feel they are able

to identify a crisis and need a response from the team in these circumstances.

Clear guidelines and access methods to the Crisis Team and other

community mental health teams need to be established for carers.

A telephone advice and information line for carers is needed. In between

appointments there are times when carers need some professional advice

about how they should respond to behaviour and/or to help them meet the

needs of the person they look after. This would be a positive preventative

measure.

When appointments are cancelled, this can leave the carer coping for a long

time without any professional involvement for the person they care for.

Consideration of the impact on the carer of cancelling appointments would be

useful, and a follow-up soon after would help.

Identifying carers accurately and communicating with them appropriately

remains an issue. Carers understand issues of confidentiality, but feel that

professionals e.g. psychiatrists, would benefit from listening to the carer’s

expert knowledge of the everyday situation.

Carers identified positive support that they, and in some cases their children,

receive from voluntary sector organisations e.g. Newcastle Carers, Newcastle

Young Carers, Children North East, West End Youth Enquiry Services. This

support should be increased.

There is a need for more communication between voluntary sector

organisations.

Carers’ priorities for improving services for the person they look after:

Community Mental Health Teams need greater investment and more

continuity of staffing – temporary staff are less effective and more expensive.

Waiting lists put extra pressure on carers.

The transition from “child” to adult services needs greater resources.

Home visits should be a priority in order to support someone to the point

where they feel able to attend appointments. When resources are limited, a

phone call would be beneficial.

All treatment options should be clearly presented to people. Carers felt they

had to research options and then push for that to be available for the person

they care for. “It feels like a battle”.

There were positive experiences of the effectiveness of acute day services.

2. Adult in-patient services

In-patient services should be available in Newcastle. Carers are an important

part of supporting someone’s recovery and rehabilitation back into the

community. This is not possible from a distance e.g. Newcastle to Morpeth

There need to be in-patient services specifically dedicated to young adults -

18-25 year olds. Adult services are not suitable for this age group.

A “halfway house” for respite and short term support is needed.