One of the main aims of this site and our support group is to help Carers, particularly those new to mental health, to understand and navigate the complexities of the Mental Health Services available in Herts. We believe this site provides a useful source of reference in achieving that aim.
Included here we identify most of the relevant organisations and their roles. This we hope will help to reduce the trial and error frustrations of individual Carers trying to find their way alone through the system. It does not attempt to replace the more detailed information available from any of the sources identified but rather to signpost their existence.
The importance of Carers as essential partners in the delivery of Mental Health services is not doubted by The Department of Health, Local Authorities, The NHS or any of the many organisations involved in service delivery and support.
The total value of Carer contribution is generally thought to save Government many millions ie Carers reduce monies that would otherwise be necessary to achieve similar results. With this level of importance of the Carer’s role, organisations realise the need to focus on and maintain Carer’s health and well-being.
Over recent years, and in particular since the Care Act 2015, organisations have increasingly recognised Carer’s contributions in consultation, policy and service delivery. An example of Carer recognition at the policy level, in recent years, is in the Hertfordshire Partnership Foundation Trust’s (HPFT) “Triangle of Care” where Carers are seen as the third point in a three way process with the other two being the cared for and the Professionals.
What is a Carer?
Based on information from the HPFT and Carers in Herts
Generally anyone regularly looking after and supporting a person with an illness or disability, whatever their situation, is a carer. Carers are unpaid and look after someone in a way that is informal, voluntary and sometimes on a long term basis.
The ‘cared for’ person can be a family member, a partner, friend or neighbour. Carers do not have to live with the person they are looking after. Carers may be heterosexual, gay or lesbian. A Carer can be of any age, including those under the age of 18 who are often described as ‘Young Carers’.
Carers come from all cultural and religious communities and live in diverse geographical areas. A Carer can also experience disability or ill health. The ‘cared for’ person may be frail, have physical or mental illness, a disability or be dependent on drugs and or alcohol. The help and support provided may include all or some of the following; emotional support, help with meals, washing, feeding, dressing and taking medication on time.
Someone who identifies themselves as the Carer may, in some circumstances, not be the Nearest Relative under the Mental Health Act (1983). Support for the cared for person may be provided in someone’s own home, in supported accommodation, in hospital, or in a residential or a nursing home.
Carer day to day activities and levels of support provided will be as varied as there are Carers and cared for. Many carers do not realize that they are Carers. They just do what they do to support and look after their relative, partner, friend or neighbour to function better.
The label Carer takes on a more formal meaning when the person cared for is receiving services from the HPFT. To the person cared for, the one informally supporting them is now formally recognised (with rights under the Act) and called their Carer, rather than simply being their Mum, Dad or other.
Whatever the degree of dependence of the person cared for, this change in status can cause some difficulties from them e.g.
It can make some feel even more dependent than they believed they really were so they reject the idea and invoke strict confidentiality on the service with regard to the Carer
- Some believe that it gives the Carer rights over them that they do not really understand or want. So again, they will not accept them as being their Carer.
- Others do not accept that they need any sort of help and therefore, totally reject the concept of a Carer.
How sudden was your introduction to the role of carer?
When their ‘loved one’ suddenly goes into crisis for the first time, Carers have little or no time to prepare and will most likely be seeking sources of help and understanding for themselves as well as their ‘loved one’. With a slower realisation over the longer term, Carers gradually take on an increasingly broader range or level of care albeit at a slower pace. However, Carers will go through a similar set of responses as outlined below but will clearly have the time to come to some form of acceptance.
Drawing on several models of how people may respond to sudden bad news, there are two main types of response that Carers often feel ie:
- An emotional response which includes; shock, tears, anger, sadness, anxiety, relief and love
- An Intellectual response which includes; denial, blame, guilt, disbelief, fear, loss and shame
Whichever you experience, all are acceptable and normal. You may also have come across the basic human response to danger called “fight or flight” where;
- fight involves getting ready to engage perhaps declaring “ I’ll beat this”
- flight often involves denial, avoidance, withdrawal to the extent of leaving
The journey to acceptance of the situation you face as a new Carer will take time. Your reactions along the way will be varied so it would be helpful to receive support from someone who will;
- support you through your various reactions
- listen attentively when you are ready to share your concerns and feelings
- acknowledge and validate your unique emotions
This is often included in the role of “Peer Support Worker” either as a volunteer for or employed by the HPFT. Once these normal responses are worked through, you can move on with a better understanding and achieve acceptance. The HPFT has an Inclusion and Engagement Team that is dedicated to supporting carers. (see information sources)
Key questions to ask the professionals
Based on Rethink and others (see information sources) and in no particular order.
- Has an assessment of my loved one been carried out yet?
- If not what will happen?
- What is the diagnosis?
- Has the diagnosis been verified by a second opinion?
- What treatment will be offered and when?
- Will it involve hospitalisation?
- Is there a waiting list for places for treatment?
- Will this be on a Care Programme Approach (CPA)?
- How will care co-ordination be carried out?
- Will I be kept informed of important meetings and allowed to attend?
- Will I be asked to provide information?
- Who do I contact if I get concerned about my loved one?
- Will medication be part of the treatment?
If medication is prescribed as part of the treatment, and particularly if you are living with the cared for you might ask:
- Is the medication prescribed the right one for the condition diagnosed?
- What is the medication and dosage?
- Is the dosage strength likely to cause side effects and what is their significance and dangers?
- Can my cared for take their medication safely as prescribed ie frequency, dosage/strength?
- Will it make a difference in their treatment in the short term?
- If we need to wait for it to have an effect how long will that be?
To find out more about the diagnoses and treatments, see Information and support for contact details of Rethink Mental Health & Mind. Additionally, to develop your skills and knowledge and help cope you might think of attending a course such as Rethink’s “Carers and Coping” course.