Jersey Focus on Mental Health

Analysis of Carers Support Needs

An exploration into the needs of carers looking after people with mental health problems in Jersey

 

 

 

 

 

 

 

 

 

Samantha Bolam 2009

 

 

 

Contents

Introduction

National Carers Research

·          Increased vulnerability of Carers of People with Mental Health Problems

·          Older Carers

·          Ethnic Minority Carers of People with Mental Health Problems

·          Younger Carers of People with Mental Health Problems

 

Methodology

Findings and Recommendations

·         Primary Care and Information

·         Secondary Care

o        Lack of Involvement in Care Planning

o        Difficulty in Accessing Psychiatrist and Inadequate Knowledge About Services

o        More Support around Medication Issues

o        Discharge Process

·         Crises Care

o        Earlier Intervention

o        Appropriateness of Accident and Emergency as Access Point

o        Mental Health Law and the Articling Process

·         Support for Carers Advocacy Service

·         Ethnic Minority Carers of People with Mental Health Problems

·         Young Carers of People with Mental Health Problems

·         Older Carers

·         Provider Perspective

·         Miscellaneous Comments

References

Appendix No. 1 – Information Sheet and Consent Form

Appendix No. 2 – Ethnic Minority Information Sheet and Questions

  Introduction

The Committee of Jersey Focus on Mental Health has identified through anecdotal evidence and personal experience that there is a need for additional support for carers of people with mental health problems in Jersey.  It is proposed that JFOMH address this need through the provision of a support service.  The following research is therefore intended to give guidance on the challenges that some carers currently face and how these challenges might best be met.

Given the need to access research participants through Health and Social Services and the potential vulnerability of participants, it was necessary to obtain the approval of the Health and Social Services Ethics Committee.  The research proposal was presented on 20^th January 2009.  Approval was formally given on 13^th February 2009 when the research could then commence.

National Carers Research

There is now a sizeable body of research looking at the impact of caring for someone with an illness from a number of different perspectives.  However, there is still a lack of research on the issue of caring for people with mental health problems which brings with it unique challenges often absent in other areas of caring.  The following examples do not represent an exhaustive list of research.   They are merely intended to help the local research to be contextualized across a broader perspective.

 

Increased vulnerability of Carers of People with Mental Health Problems

 

The 1999 National Strategy for Carers ¹ and Carers UK ² identified that assessments for carers of people with mental health problems and carers from ethnic minority communities were particularly low.  Furthermore, carers of people with mental health problems report higher levels of mental distress than other carers.  Carers UK have suggested that the government pay particular attention to carers of people with mental health problems as they are far more likely than other groups to have unmet needs.

Research therefore highlights that carers of people with mental health problems are a particularly vulnerable group needing special attention.  There is every reason to surmise that the situation in Jersey is just as acute given that local carers do not even have the right to a formal needs assessment as UK carers have done since 1996.  One could argue that there is an even greater risk of unmet need in carers of people with mental health problems resident in Jersey.

 

Older Carers

 

The Age Concerns report Improving Services and Support for Older People with Mental Health Problems published in 2008³ also highlights a range of worrying statistics in relation to older people.  These findings have particular relevance here given that the risk of becoming a carer increases substantially in older age. The Age Concern report states the following:

 

·         One in four older people living in the community have symptoms of depression

that are severe enough to warrant intervention.

·         Only a third of older people with depression ever discuss it with their GP.

Only half of them are diagnosed and treated, primarily with anti-depressant

·           Depression is the leading risk factor for suicide. Older men and women have

 some of the highest suicide rates of all ages in the UK.

·         Dementia costs the health and social care economy more than cancer, heart

·         disease and stroke combined.

·         Fewer than half of older people with dementia ever receive a diagnosis.

·         A third of people who provide unpaid care for an older person with dementia

·         have depression.

·         T here are approximately 70,000 older people with schizophrenia in the UK.

·         People aged between 55 and 74 have the highest rates of alcohol-related

·         deaths in the UK.

·         It is agreed that rates of both prescription and illicit drug misuse in later life are

under-estimated but few if any definitive statistics exist.

 

The statistics are worth bearing in mind when one considers that many older carers in Jersey will be subject to their own mental and physical decline and the stresses and limitations that these bring to their carers role.

 

Ethnic Minority Carers of People with Mental Health Problems

 

The National Strategy for Carers mentioned above touches on the issue of carers from ethnic minority communities in the context of low uptake of carers assessments within these communities.  There is a significant body of research that highlights this group as being particularly vulnerable on a number of different fronts:

There does not appear to be a single area of mental health care in this country in which black and minority ethnic groups fare as well as, or better than, the majority white community. Both in terms of service experience and the outcome of service interventions, they fare much worse than people from the ethnic majority do. In addition, disease burden associated with mental disorder appears to fall disproportionately on minority ethnic populations.

Whilst there is little evidence to show that children and young people from minority ethnic groups are more likely than the indigenous white population to have mental health problems, the higher levels of poverty and unemployment in minority ethnic families suggests that, for some children, the risks will be greater4

Locally, Adult Mental Health Services have already expressed concerns that ethnic minority communities are underrepresented in terms of service use indicating that many ethnic minority carers will be without any formal support from mental health services in Jersey. 

Younger Carers of People with Mental Health Problems

Finally, it is important to consider the impact of caring on younger people.  As a group who are limited in many ways in terms of speaking out about any challenges they are facing, the research would certainly be lacking if it did not take into account one of the most vulnerable groups of carers in Jersey.

 

Research has established some of the implications of being one of the UK’s 175,000 known young carers, including the risk of truancy, under-achievement, isolation, mental and physical ill health, poverty and stress. These risks are particularly acute for young people affected by parental substance misuse (250,000 young people in the UK1), parental alcohol misuse (1.3 million young people2) and parental mental health problems (4.2 million parents3).5

 

Methodology

The research adopted a purposive methodology which addresses the need to engage defined groups that reflect the diversity of carers in Jersey.  The main aim of purposive sampling was to collect data from a range of carers across the life course, from different social backgrounds and from different ethnic minority groupings.  Carers in Jersey are not a homogenous group and the research needed to capture a broad range of challenges as they relate to each specific group of carers.

 

The Jersey Carers Strategy 6 states that approximately 10,000 people are currently providing unpaid care to someone.  However, there are no statistics that indicate how many of these people are caring for people with mental health issues.  Adopting the ’one in four’ figure to arrive at a rough estimation, there could feasibly be in excess of 2,500 carers of people with mental health problems locally.  This is likely to be a conservative estimation.

 

In the case of research involving qualitative methods only, it is recognized that the number of participants may be small and will not be determined using a statistical power calculation. Qualitative data was collected from 28 carers whilst the younger carer perspective was obtained from Child and Adolescent Mental Health Services as the Ethics Committee approval only covered research participants who were over the age of 18 years old.

 

A holistic definition of ’carer’ was used for the research as many people who are providing vital support do not always define themselves as carers.   The majority of participants had already been defined as carers by Adult Mental Health Services or other support services which reduced the risk of carers opting out of the research as they did not feel what they were doing was providing care.  A good example comes from a mother still looking after a son who is now in his fifties:

 

"Oh, I’m not a carer, I just keep my eye on him and remind him to do things that he needs to do like keep himself tidy and getting him out of the house to attend meetings and appointments."

 

A questionnaire was designed (Appendix 1) and the questions focused on primary care and information, secondary care and crises care.  All participants were also asked to comment on any issue they thought was important from a carer’s perspective and had not come up via the questioning process.  The questionnaire was greatly simplified for ethnic minority communities (Appendix 2) when it became apparent that the form was too complicated and asked inappropriate questions to those who had not accessed services through perceived and concrete barriers.  The questionnaire was administered by a worker who had appropriate language skills rather than translating the document and leaving people to fill the form in unassisted. 

 

At the initial stages of the research, people were given the option of attending a focus group.  Everyone declined this option and preferred the option of taking part in a one-to-one interview.  Although this is more time consuming, this approach was then adopted as it was also easier to fit into busy people’s lives rather than trying to get a number of carers with all their attendant responsibilities in the room at the same time.

 

Responses to the questionnaire where then grouped into themes followed by recommendations for future action.

 

Views of providers were also sought to ensure that a full picture is described in relation to carers support needs in Jersey.  These are provided on page 10.

 

Findings and Recommendations

The following table gives a profile of carer participants in terms of age and country of birth.

Female/Male	Country of Birth	Age
Female Female	Jersey Jersey	87 61
Female Female	Madeira Madeira	52 36
Female	Jersey	45
Female	England	49
Male	Jersey	27
Female	Jersey	28
Male	Jersey	50
Female	Ireland	75
Female	Jersey	39
Male	Jersey	31
Female Female Female Male Female Female Female Female Female Plus 7 members of JFOMH Carers Group	Portugal Venezuela Madeira Jersey Jersey England                                               Madeira	41 55 37     59   25
Total		28

 

Primary Care and Information

Nearly all of the carers interviewed stated that they did not feel they had been helped as a carer through visiting the GP.  Comments ranged from a feeling that the GP did not understand mental health issues, through to GP’s being ’disinterested, dismissive, unhelpful or ill informed’.   There were a number of instances where satisfaction with GP support increased after carers had been redirected to a different GP who appeared to have more understanding, knowledge and empathy around mental health issues.  Two participants felt that it was unreasonable for the GP to have that level of specialist knowledge around mental health issues.  However, the majority of comments spoke of a frustration of not being taken seriously and a concern that this prevented the early detection of a breakdown in the mental health of the person they were caring for.  Recent research conducted by the Sainsbury Centre for Mental Health7 highlights this concern for both users and carers:

Research is needed to improve the support provided within primary care for people with mental health problems. Particular issues of concern include the early detection of mental health problems within primary care, support for ’common mental health problems’, and provision of physical healthcare for people with mental health problems.

 

A direct quote from a participant:

"I want to feel like I’m being taken seriously by the GP.  I see X everyday and I know when things are going downhill.  If only they would have listened to me things wouldn’t have got so bad. I feel that they hid behind the confidentiality issue.  I wanted to be able to tell them things that were going on, not for them to breach patient confidentiality."

Issues around confidentiality were raised time and time again throughout the rest of the questionnaire also.  Many carers acknowledged that confidentiality for users was important but felt dissatisfied that there was not a better way to involve them in their relatives care without necessarily breaching confidentiality.

"I know being included is a thorny issue and not necessarily the services fault.  I do feel terribly shut out at times.  With any other illness you can share in the procedures and be kept informed of what’s going on.  Sometimes the lines are drawn too tightly.  At the outset you need someone who can talk you though what is happening.  It’s a confusing and difficult period and doors get slammed in your face.  Carers need more support, help and information."

With reference to the availability of information in relation to local services and information about mental illness, responses were more mixed.  Many participants relied on the internet for general support and advice and were happy to seek this information out for themselves.  Some participants had been kept informed by health professionals and viewed them as a vital source of information.  However, there were several participants who felt that there were gaps in information about mental illness and where to go for support.  Many of the participants for example did not know about the JFOMH carers support group.  Eight people commented that they would really like a one-to-one support from someone who had direct experience of caring for a friend or relative with mental health problems and described something akin to a buddying system.  Some of these participants said they would not have the courage or would not be interested in attending a group. Some were concerned that there would be people there they would know.  There were also a number of comments about out of hours support and where to go for help when there was a crisis point and there had been no contact with services previously.

Recommendations:

To conduct focused work looking at mental illness issues resulting in:

·         The development of an initiative that supports partnership working with carers within primary care without breaching patient confidentiality including discussions with GP’s around options of GP’s with a specialist mental health interest.

·         Develop a carers pack to be circulated through GP’s surgeries, Adult Mental Health Services and other voluntary organizations listing support agencies with contact details including out of hours support, general information and practical advice.

·         Develop a peer support system as an alternative support for isolated carers who do not want to access group support.

·         Schedule public media campaign looking specifically at awareness-raising of support at time of crises.  Activity to repeat at set intervals to ensure that knowledge remains accessible to the public on an ongoing basis.

Secondary Care

There was a broad range of issues covering involvement in care planning and the discharge process.  Similar responses have been grouped into themes below.

Lack of Involvement in Care Planning

This occurred for a number of reasons.  Some participants were happy that they had been thoroughly involved in care planning.  A third of the participants who had experience of secondary care complained about the lack of continuity with nurses and how each individual influenced how they were included or excluded from the process.  Two participants give an example:

"One nurse was really good.  She’d always take you into a side room and let you know what was going on every time I went up.  Then she left and the other nurses didn’t bother."

"Involvement was sketchy.  Depended on what nurses were around.  Some were good and some were not so good at letting you know what was going on.  There is a way of including us without breaching confidentiality."

Another example of how people felt excluded was through the volume of information that was passed on.  They felt unable to assimilate the volume of information and would have liked help with this.

Difficulty in Accessing Psychiatrist and Inadequate Knowledge About Services

Eight participants said that they found it difficult to get in touch with a psychiatrist, particularly over the phone and many complained about unreturned phone calls.  One participant commented that this improved dramatically when they paid for care as a private patient.  Two participants said they would have liked more information about Adult Mental Health Services as they were not sure when to access certain aspects of it.

More Support around Medication Issues

Several participants mentioned concerns about after care with regard to medication and would like to see this as more consistent and supportive.  Participants mentioned that they would like more simplified advice and information about medication.

"I was not informed about side effects.  I’m too stressed to sit and read the leaflet in the medication.  If the psychiatrist had mentioned weight gain and restlessness, it would have saved me a lot of worry."

Discharge Process

Roughly half of the participants made some complaint about the discharge process whilst the other half was satisfied with it.  The main complaint was that it was too soon after admission and participants believed that a slightly longer stay in hospital would have prevented a relapse.  A third of the participants had a designated contact point after discharge if they had concerns.

Recommendations:

·         To review issues around confidentiality in partnership with the States Data Protection Department.

·         Issues around involvement in care planning, access to prompt advice from Mental Health Services and a designated contact for carers at the point of discharge could be addressed effectively through the inclusion of carer perspectives within the Partnership Project which is tasked with developing services to be more in line with clients needs. An additional carer focused session could take these issues forward sensitively without losing the focus on user perspectives.

·         Adopt Royal College of Psychiatrists ’Partners in Care’ checklist for carers (Attached) to assist carers in getting the most out of time with psychiatrists.  Checklist to be included in proposed ’carer pack’.

Crisis Care

Earlier Intervention

The majority of participants talked about feelings of frustration that their concerns weren’t taken seriously before the point of crisis arose.  Carers talked about the need for earlier intervention to try and avoid a total breakdown in the person they were caring for.

"People need to go into hospital earlier.  I’ve seen the balance swing over the past 20 years.  People used to be admitted too soon which was wrong but now I think it’s gone much more the other way.  Professionals are leaving it too long and people are getting too ill."

Appropriateness of Accident and Emergency as Access Point

Again, the majority of participants who had experience of crisis care expressed dissatisfaction with having to go to Accident and Emergency Services at a time of crises in order to access care.  Four participants commented that if you are well known to services and the person they are looking after is very ill, they should be able to take them straight to Queens House.  Participants expressed concern about the impact of having to wait in Accident and Emergency.

"X was very agitated and I was lucky to get them there in the first place.  Everyone was looking at us.  Then we had to wait for ages for someone to see us.  It’s just not appropriate for someone who is very mentally ill.  It just makes the situation even more stressful."

Mental Health Law and Articling Process

Three participants talked about difficulties with the process of articling.  One participant said that not being allowed to accompany mother in police car on the way to hospital just made matters worse.

"She was paranoid anyway and thought she was being kidnapped.  She really needed someone there who she knew and trusted and this would have kept her a lot calmer.  I felt really awful and it took her ages to get over it."

Three participants talked about the trauma of having to authorize the Article.  They felt it was something that should be done by a professional.

"I felt so guilty having to do this to X.  I couldn’t take anything in when I was signing the form. I’m her mother.  Surely this is what professionals are paid to do.  I really don’t feel that family members should be responsible for this."

Recommendations:

·         To review the Mental Health Law and its operation in partnership with the police, users and carers and Adult Mental Health Services.

·         To review possibilities around earlier intervention and accessing crises care with users and carers as part of the Partnership Project.

Support for Carers Advocacy Service

Participants expressed overwhelming support for a support service like a carers advocacy service.  Only one participant said that they weren’t sure such a service would help.  However, it is clear from the participants responses that there is a huge need for emotional support, particularly at the outset of a mental illness when many carers expressed feelings of trauma and shock, alongside the more practical support that advocacy provides.

Recommendations:

·         To trial a Carers Advocacy project over a twelve month period and look at the possibilities of combining role of advocate with management of the Peer Support Scheme recommended in the Primary Care and Information section.

Ethnic Minority Carers of People with Mental Health Problems

None of the ethnic minority participants had received support from services in their role as carer.  One participant in particular gave an account of looking after a distant relative who was schizophrenic and had tried to take his own life.  He was discharged into her care and shortly after became very ill again.  The participant had very poor English skills and was left with no support and little idea about who to ask for assistance both for herself and her nephew.  A number of different issues were listed as concerns:

·         Staff within Mental Health Services do not have adequate language skills making it difficult to support people from different ethnic backgrounds.

·         Information about services and mental illness is not available locally in different languages.

·         Lack of trust around issues of confidentiality of existing translators due to anecdotal evidence of breaches of confidentiality.

·         High levels of suspicion and lack of trust for support services general with a perception that they will ’just make matters worse.’

Young Carers of People with Mental Health Problems

As previously stated, views were obtained from the Child and Adolescent Mental Health Service as the Ethics Committee approval only covered research participants over the age of 18 years.  The main issues that CAMHS raised in relation to young carers were as follows:

·         The need to recognize that children in particular can start to carry out a caring role from a very young age therefore any initiative needs to be able to engage with children as young as primary school age and onwards.

·        A concern that the needs of children might not be fully acknowledged and addressed, particularly when a parent becomes very ill and goes into hospital.  Who is responsible for ensuring that these children are ok?

·        Particularly concerned about Portuguese young carers as Portuguese families seem to drop away from CAMHS support very quickly.

·        Concern about awareness and skills of teachers in schools in engaging with young carers who are often carrying a lot of emotional baggage and stress which often interferes with learning and affects behavior.

·        Any support for younger carers needs to be time intensive.  An hour a week will not be adequate.  Support would be most likely needed 3 or 4 times weekly.

·        " More information and support around what is going on needs to be given in a child friendly way."

Older Carers

Older participants raised a number of concerns:

·         The need for regular respite.  Some participants talked about never getting a break

·         A concern for the future of the person they are caring for after they are no longer able to care.  One participant commented ’ I feel like they’ve given up on him because I’m looking after him.  I won’t be around forever will I!’

·         Difficulties with travelling to the hospital when the person they are caring for becomes acutely ill.  Particularly for those people living on the West of the island with no transport of their own.

Recommendation:

The information provided above needs to be viewed in unison with the information and recommendations given above.  The only recommendation in this section is that each of the categories of carers above requires individual attention and resources.  It would be advisable for JFOMH to prioritise one group of carers in conjunction with other recommendations and to address their needs in a focused and comprehensive manner, resisting the urge to spread the resources of the charity too thinly.  It would appear that there are more than enough issues to warrant a full time post to help to ensure that there is an equality of service provision across a whole range of potential users.

Provider Perspective

The following section is included in order to give some steer on a provider perspective of carer issues in Jersey.

·         A number one priority issue for carers is the need to have their voice heard and to be taken seriously.

·         There is a need for more understanding around the balancing act that professionals need to accomplish.  We have to balance our own judgments with regard to service users against the wishes of their carers and this is not easy.  Sometimes relatives don’t understand what we can and cannot do.  Sometimes we also get it wrong!

·         More attention needs to be paid to the practical things that are often viewed as side issues.  Things like housing, benefits, basic hygiene, adequate clothing and employment are hugely important to both users and carers and are sometimes neglected.

Miscellaneous Comments

"Feel the loss of things like the drop in centre at chez marguerite.  There are a lot of people with mental health problems wondering around with not enough to do."

"They need more leisure activities to keep mental wellbeing.  Golf, reopen swimming pool and reinstate sailing classes and trips to France."

"More therapeutic activities like the farm. It gives us a break too."

"Look at difficulties around accessing carer benefits when person you are looking after does not have the capacity to sign the form for Employment and Social Security.  I got into a lot of debt over this and had absolutely no help."

References

¹ H.M. Government, 1999, Caring about Carers: A National Strategy for Carers, HMSO, London

² Carers UK, 2003, Missed Opportunities, The impact of new rights for carers

³Age Concern, 2008, Improving Services and Support with Mental Health Problem

4 http://www.schizophreniaguidelines.co.uk/users_carers/black_and_ethnic_minorities.php accessed 1st May 2009 10.30am

5 Manchester MetropolitanUniversity, 2007, At What Cost To Young Carers? An economic assessment of the value of young carers’ interventions for young carers’ affected by parental substance misuse and mental health problems

 

6 States of Jersey, 2009, Jersey Carers Strategy

7Sainsbury Centre for Mental Health, 2006, Research Priorities for Service User and Carer-Centered Mental Health Services;  Summary of findings from a national consultation

 

 

 

 

 

 

Appendix No. 1 – Research Questions

Jersey Focus on Mental Health

Research Information Sheet and Consent Form

Jersey Focus on Mental Health would like to thank you for taking the time to consider taking part in some research.  JFOMH believe that there is much that can be done to improve services for people who are caring for someone with a mental health problem.  In order to decide how best to do this, JFOMH want to talk to carers to find out your views on what would help you the most.  JFOMH will be giving you three different options to take part throughout February and March 2009.  Could you please tick which option would be the most agreeable to you:

Taking part in a focus group :              A number of carers (approx 5-10) will come together as a group and will be guided through some questions (please see appendix 1) by an independent person.

Taking part in one-to-one interviews :            If you would rather be interviewed without anyone else present, an independent person will meet you at a place convenient to you and will ask you the questions in appendix 1 and will make notes of your answers.

Questionnaire :            If you are happy to, you can fill in the questions overleaf and return them to the address below.

If you take part in the research your rights will be:

·         That you can withdraw from the research at any time.

·         That the interviews will take place in a supportive environment.

·         That any of your comments that go through to the final report will be totally anonymous.

·         That all information will be kept secure and your name and address will be removed from any database after you have received a copy of the final report.

·         You will be refunded any out of pocket expenses such as travel.

·         If you have difficulties in participating either through language barriers or sensory impairment, the researchers will put support in place to enable you to fully participate.

If you take part in the research your responsibilities will be:

·         If participating in a focus group, not to divulge the identity of the person with mental health difficulties that you are caring for.

·         To act in a respectful manner to other carers contributions, even if you do not agree with what they are saying.

Please return to Sam Bolam in the stamped addressed envelope provided.  If you have any further questions please call Sam on 01534 514848 after 5.00pm or email sam.bolam@jerseymail.co.uk

......................................................................................................................................................................................

I have read and understood the above information.  I consent to take part in the research.

Name...............................................................................................................................  Date ..................................

Primary Care

Does your GP have a good understanding of mental health issues?

Is there anything else that your GP could do to support your role as a carer?

Could you tell us if you were able to get all of the information you needed about looking after someone with mental health issues when you needed it?

Secondary Care

Are you actively involved in the Care Planning Process with service providers?

Can you suggest ways in which the Care Planning Process can be improved?

Are you happy with the current discharge process from hospital?

Do you have a contact point within services where you know you can get support after discharge?

Crises Care

Can you suggest ways to improve current practices in crisis care?

Do different organizations share information effectively during a time of crisis?

Advocacy

An advocate is someone who can support you in accessing services and can help you to put your point of view across to service providers.  Their services are free and independent of Adult Mental Health Services.

Do you think there is a need for such a service locally?

What kind of things do you think they could help you with?

And finally...

Have you anything else you’d like to comment on in relation to being a carer of someone with mental health issues in Jersey?

 

 

 

 

 

Appendix No.2 - Ethnic Minority Questionnaire