Carers

You need Flash version 9 or later to view these videos. Download the latest version from here.
The Triangle of Care (Video file)

The Triangle of Care

The Triangle of Care is a guide for staff working in mental health services to promote the inclusion of carers in care-planning, decision making and the treatment of people with a mental illness. 

This film which accompanies the guide includes interviews with Anna Chan, Alan Cork and other Oxleas carers.

Nobody but a carer knows what they are going through and they need help because they are not trained to deal with someone who is dealing with psychiatric illness

Sky News Update: 
The point about helping carers is that I think we need to help them go on doing what they are doing.  Talk to any carer and they will say the one thing they need is a break, and I do not think enough now, actually put the budget in their hands and say you deicide how best to get that respite break, to get the extra help in your home.  I remember trying to do this myself with the care for my son and it’s incredibly complicated this whole agenda should be abut putting power and control in peoples hands letting them do more, because if Britain’s armies of carers gave up that would cost our country £50 billion and actually lead to heartbreak for so many people they really are hero’s and heroines.

Anna Chan: 
I think my job is really interesting because as well as working with clinicians I work with carers as well and that gives me a very good perspective of both sides because I am a carer myself and I attend support groups. I understand why they are not happy of certain aspects of the services they receive or their family members receive.  I am able to communicate with them and explain the difficulty our staff have in sharing information and offering support to them.

Alan Cork:   
My caring role stands for 30 odd years because it started with my wife, and then after her death it then started with my daughter.  It has been long journey and it is still going.

Woman 1:
I am a carer for my daughter now she has got the same illness as my mum, she has Schizophrenia and plus I am a carer to my husband, so I care for two. Somebody had actually told me you are a carer before then I was just doing what I could for my son like protecting him.

Alan Cork:
In the early days of my wife’s illness I was not told anything and I used to go to the  GP and ask what was happening and they would say ‘Sorry we cannot discuss this with you due to patient confidentiality’ but what they did not seem to understand was that I had taken over the persons life completely as their life was out of control so I was having to manage their life.

Anna Chan:
I think first of all when someone is admitted to an acute ward, we try to get their consent to share information with family carers.  If they give consent that will make  our work a lot easier but even if they do not give consent we can still share general information about the ward's and treatment in general.  We do not want to stop communicating with carers just because the service user will not give us permission.

(MAN – Picture with trees)
My wife tried to kill herself one day and it was shortly after the birth of our son.  I did not realise at the time but she was suffering from post natal depression.  She was admitted to first of all Greenwich hospital where she had been in a coma which I suppose that’s when I became a carer but after that it became quite severe so she was taken back into hospital because she continuously threatened to kill herself. 

Its very hard because my daughter couldn’t be left by herself I had to be with her all the time, I didn’t have a life.

Alan Cork:   
And I had friends and relatives who turned their back on us because they got fed up with the hostile reception they got when they came to our house.  I became more and more isolated, and equally I was looking after two young children who were growing up.  It became increasingly frustrating, i.e. I would often sit alone in the dark and cry because I didn’t know where to turn to or who to talk to.

Woman 2:   
Initially absolutely no listening as far as patients when my son was the patient and I was his mother there would be officials and the officials were talking down to me.

Anna Chan:   
At Oxleas we have a number of training programmes to help staff to work with families and carers.  The main training programme is called family inclusive practice training, which is based on a training course developed by Somerset NHS trust.  It’s a two day, team based training course, and which involves a carer talking about the caring experience which I think is actually the most important part of the course.

Woman 2:
You can’t have the correct amount of sleep because you are worrying about what the future is going to be, and the problems of the day ahead.  You then worry about the attitude of the staff and doctor.  It all just crowds in on you.

Man:  
At some point I don’t know when, my relationship eroded, but I was coming back from the hospital one day and I was seeing this pain in my head and then the next thing I know I am out in front of a bus and thankfully I had my arm out stretched and the bus hit the arm and knocked me back on to the foot path.  The strain of seeing your wife, you know the person you love, not being the person you love, it all takes a great strain.

Anna Chan:
A number of our carers have been involved with the training course that I mentioned, the Family Inclusive Practice training course. We find it really valuable because we are helping clinicians to understand the burden of caring and also their contribution in helping the patient to recover.  In fact a number of carers have said to me it is really good therapy to talk to clinicians because it helps them to unburden their worries and also to have someone to listen to them.

I recognise by not involving carers we are missing out a lot of information about the person that may be unwell.  Clinicians only see the patient when they are unwell, they do not know what type of person they are when they are well so I really believe that we should involve family and carers.

So it is interesting I think that the new generation of people coming up in the psychiatric profession have got a different attitude to the carers and are listening and understand the problems of being a carer.

Baeti Mothobi:
In the last 18 months the staff from Oxleas have been the opposite of what they was before, and things are so much better.

Alan Cork:
I notice that when I got to the GP surgery, and also to hospitals that there are lots of leaflets about where to get help to give up smoking, to lose weight, or if you have drink or drug problems, but there is nothing up there for carers and I think that this is an important issue that carers need to have help and support as soon as they start but they never know where to go and these things are not properly publicised or promoted and I think every doctors surgery should have information about carers support groups on their notice boards, and leaflets regularly available for those who need help. 

Anna Chan: 
At the trust we have a range of handbooks and leaflets for carers the main one is the information handbook which tells carers about services within Oxleas trust and also local services if they need help from carer centre or organisations such as Re-think and Mind.

At Oxleas we recognise it is quite difficult to engage with working carers so we have to start a really exciting two year project to look into using technology to communicate with carers and service users by using things like webcam, telephone and video conferences.  I believe we can engage carers by inviting them to meetings in acute ward or the community mental health centre.  We also hope to set up an online carers support group as well.  We do recognise the difficulties for working carers so in two of our acute wards we have evening carers support groups. 

I spoke to a number of staff who attended the family inclusive practice training course and they all found it really useful especially listening to the carer talking about his experience of caring.  I think sometimes when you work with the patient you have no idea what happens with the family when they leave the hospital, who takes care of them the type of things that families have to do for the patient, things like cooking, shopping and even things like banking.  Really simple things like driving them around to friends, also just reminding them to take medication.  I think after listening to the carers experience I think staffs are a lot more sympathetic and a lot more respect for the work cares do at home for the patient.

Inpatient admission - older adults: A carer's experience (Video file)

Inpatient admission - older adults: A carer's experience

Sandra Sweetman explains how she was reassured by the excellent care her mother received in an older adults inpatient unit.

Hello, my name is Sandra Sweetman and I care for my mother Luciana who is now 84 and has suffered from depression for most of her life.

When in 2002 it was suggested that Mum be admitted to an older adults inpatient psychiatric unit I was to say the least very apprehensive. But it was nothing at all as I had expected it to be.  Mum had her own en suite room which was kept clean at all times, as were all the other areas on the ward.

The staff are some of the kindest people I have ever met, their patience with all the patients, even the most difficult - of which my mother could be one -  was impeccable. No matter how busy they were they always made time for them and their relatives.

So when mum was readmitted recently I had no worries whatsoever. As it turned out she was there for 10 months and I enjoyed getting to know staff and patients as I spent nearly every day there.

I really hope that my message will be of help and comfort to anyone who is worried about a relative or friend being admitted.

Support for carers (with signing) (Video file)

Support for carers (with signing)

Helen outlines the range of support that people caring for others with a mental illness or a learning disability can expect to receive from Oxleas, including putting them in touch with other carers and local carers' groups.

Hi, my name is Helen Dunkley and I am the Trust Carer Lead for Oxleas.

Carers are people who care for others with mental illnesses or a learning disability, usually this is family members or friends. Carers need a range of different support services, but most often they tell us that the number one thing they need is information.

When people become carers this is often their first experience of mental illness, so they need a lot of information about illnesses and treatments. They also need to know what services are available for themselves and their relatives, how these services operate, and who they can contact in a crisis or talk to if they have concerns. 

Much of this information will be told to them by their relative’s care team, but Oxleas also provides written material for carers. This includes:

·       a carer information handbook;

·       a series of information sheets about illnesses and treatments; and

·       tips on how to manage different behaviours.

A range of carers’ groups are run by Oxleas in partnership with our local boroughs. Many carers find these very helpful as they give them the opportunity to share their experiences with other people in a similar situation. Each borough also has a separate carers’ service which offers a range of services including:

  • One-to-one support
  • Advocacy for carers
  • respite or sitting services
  • befriending, counselling, complementary therapy and stress busting sessions.

Carers are entitled to a carers’ assessment, which many people find enormously helpful. This does not assess their ability to care, but rather asks them whether they wish to continue to care and what they need help with.

Young people can also be carers, caring for a parent or another adult with a disability. While helping out can help them develop skills and confidence, we need to ensure they don’t take on too much. Oxleas has information for young carers and each of our three boroughs has a young carers project where young people can get support and meet other young carers.

You can find information about carers’ groups in Bexley, Bromley and Greenwich boroughs in the Advice and Guidance section of this website.

Using the Mental Capacity Act: Involving family carers (Video file)

Using the Mental Capacity Act: Involving family carers

This film is about the ways that family carers can and should be involved when a relative with learning disabilities is unable to make a decision for themselves.

For more information please visit http://www.hft.org.uk/

Subtitles included.

Caring for someone with dementia (Video file)

Caring for someone with dementia

Oxleas governor Angela Clayton-Turner talks about caring for her husband, who has Alzheimer's Disease.

Hello, I’m Angela Clayton-Turner and my husband Ted has had Alzheimer's Disease for the last 14 years.

In 1995 Ted began to have problems with his memory and eventually had to leave work because of them. We’d been married seven years and he was just 57 years old.

In some ways I was lucky. In the 1970s and ‘80s I had worked as a physiotherapist in a psychiatric hospital and in community mental health teams so had some knowledge of dementia. We also had a very good GP who referred Ted to a neurologist who carried out tests that showed that Ted had dementia. This early diagnosis was crucial – GPs sometimes diagnose dementia as depression which can delay treatment. Ted was prescribed dementia drugs which really boosted the quality of his life.

At that time I saw myself as Ted’s supporter rather than his carer – he could wash and dress himself – and we both just got on with our lives. His dementia was fairly mild and we decided to be positive and have as many good times as we could manage. We flew on Concorde, went on a fabulous holiday cruising in Alaska and had my 60th birthday party on the Orient Express. We also took a number of canal trips on hotel narrow boats. These were great as the boats were operated for us.

In 2004 things started to change. Ted’s dementia accelerated and by the end of the year his condition was deteriorating fast. My role had changed from supporter to carer. A few days after Christmas he became very confused and following a trip to our GP we agreed that it was time to admit Ted to Green Parks House in Bromley.

Ted is now in the last stages of dementia, in a local nursing home. I visit him several days a week to feed him lunch. One of the most important ways I have coped with his illness is by taking a proactive approach. This has included acting as Ted’s advocate with his doctors and other healthcare professionals, and becoming an Oxleas governor.

I also belong to an informal carers’ group which has been an important source of support. I think it’s really important to be able to share your experiences with people who are in the same boat as you. In the early stages of Ted’s illness I desperately wanted to meet someone locally who was also a spouse of someone with dementia - rather than a daughter - and I think the carers’ groups across the trust can play a vital role in putting people in touch with each other.

Resume playback

  • The Triangle of CareThe Triangle of Care

    The Triangle of Care is a guide for staff working in mental health services to promote the inclusion of carers in care-planning, decision making and the treatment of people with a mental illness. 

    This film which accompanies the guide includes interviews with Anna Chan, Alan Cork and other Oxleas carers.

  • Inpatient admission - older adults: A carer's experienceInpatient admission - older adults: A carer's experience

    Sandra Sweetman explains how she was reassured by the excellent care her mother received in an older adults inpatient unit.

  • Support for carers (with signing)Support for carers (with signing)

    Helen outlines the range of support that people caring for others with a mental illness or a learning disability can expect to receive from Oxleas, including putting them in touch with other carers and local carers' groups.

  • Using the Mental Capacity Act: Involving family carersUsing the Mental Capacity Act: Involving family carers

    This film is about the ways that family carers can and should be involved when a relative with learning disabilities is unable to make a decision for themselves.

    For more information please visit http://www.hft.org.uk/

  • Caring for someone with dementiaCaring for someone with dementia

    Oxleas governor Angela Clayton-Turner talks about caring for her husband, who has Alzheimer's Disease.

Carers play an enormously valuable role supporting someone throughout illness and on the journey to recovery. They provide a range of emotional and physical supports without which many people would not be able to live independent and fulfilling lives.

Over six million people in the UK provide unpaid help and support to individuals who are ill, frail or disabled (Carers UK survey 2011) and this number is likely to increase as the population expands and people live longer. A recent report by Carers UK (2011) estimated that carers save the economy £119 billion per year, an average of £18,473 per carer, equivalent to the whole budget for the NHS. 

Caring for someone can be rewarding but it can also be a challenging, demanding, lonely and stressful experience. We know being a carer can impact upon family life, friendships, health and wellbeing, finances, and the ability to work or pursue education or leisure activities. Carers may be any age and some carers are faced with additional challenges: for example carers from black and minority ethnic (BME) communities report difficulties associated with a lack of cultural understanding with some professionals, language barriers, and resistance within their own community. Young carers can find it difficult to juggle their responsibilities at school and at home, and may face social exclusion from or by their peers.

We are committed to working with, involving and supporting carers and have developed a Carers’ Strategy to focus how we will do this across all of our services – community health, mental health and adult learning disability. 

Our carers lead has been pivotal in driving the importance of recording carers for patients on CPA onto our clinical system with current recording at 92.9%. We recognise that a carer’s assessment is essential for identifying a carer’s needs, and providing information and support to carers. We have trained our staff to carry out carer’s assessments and have measured implementation through monthly reports; this has helped support staff in identifying gaps in their recording and ensured they update the electronic patient. 

We have a profound admiration and respect for everyone undertaking a caring role for a person with a physical or mental illness, frailty or disability. We hope our strategy meets our carers' expectations and continue to work with both carers and our local partners to improve the carer experience.