Carers breaks

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Guidance

Welfare benefits

Details of where to go for advice on benefits for carers.
Outcomes: 
PreventionWellbeingCarer awareness
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingCarers servicesCarers involvementCarers breaksInformation and adviceEmploymentSocial careEducation
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 11:30
Body: 

Many carers say that they are worse off financially once they become carers.

Although one of the key aims of any carers strategy will be to support carers in employment and training, giving access to high quality benefits advice is also crucial.

Just like any other person, carers may be entitled to a range of benefits, both means tested and situation based.

Benefits are complex and the advice given and ‘better off’ calculations should always be obtained from someone with relevant training and expertise – usually through a local authority benefits service, a CAB or other advice agency.

Further information

Carers UK has a freephone advice service - call 0808 808 7777,  Monday to Friday from 10.00am to 4.00pm.
    
For comprehensive information visit Carers Direct.

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Guidance

Introduction to local carers services

Details of network partners carers centres and schemes, and the services they provide.
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carersCarers in employment
I work in: 
Health careCarers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning for young carersSocial care
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 10:45
Body: 

What is a local carers centre?

The nationwide network of 144 carers centres work to reach carers and develop services for carers across the country.

Carers centres are independent charities that deliver a wide range of local support services to meet the needs of carers in their own communities. All carers centres provide, either by telephone, drop-in or outreach surgeries, the following core services:

  • Information and advice - about all issues affecting carers, including benefits, breaks, respite and support services, carer assessment procedures, aids and adaptations.
  • Emotional support - by providing opportunities for carers to talk through their concerns, both individually and in group sessions, with staff, trained volunteers and other carers who understand their situation, thus helping to alleviate isolation and stress.
  • Community consultation - carers need a unified voice in any locality to ensure that they have an impact on decision-making. By working with other agencies and consulting carers, carers centres can have a strong influence on local policy, planning procedures and outcomes. They can also ensure that the local carers' voice can be linked in to the regional and national decision-making bodies.

Carers centres develop other services in response to identified local needs. These might include:

  • Advocacy - at tribunals, assessments, case reviews, assistance to access funds and services, or whenever a carer needs a friend or supporter.
  • Practical help - befriending, breaks, transport, benefits advice.
  • Training and education - in skills often needed by carers, such as moving and handling, first aid, and care giving; personal development; stress reduction through reflexology and aromatherapy; and training and education for professionals on carer-related issues.
  • Fun - time out, breaks, the opportunity to enjoy a social life, taking into account carers' special needs and sense of isolation.

The aim of our work is to help ensure that no carer has to reach crisis point before they get the support they need. In short, to make it easier for carers to cope.

What is a Crossroads Care scheme?

Crossroads Care schemes are a network of 76 local independent charities providing support to carers and the people they care for, often through the provision of flexible breaks.

Services are provided through a network of local providers across England and Wales, each offering our core service where a trained carer support worker comes into the home to take over the caring responsibilities. The aim is to provide support that is consistent and reliable and build long and trusted relationships.

Each local provider is an independent charity which may provide additional services according to funding and demand at a local level.

All local Crossroads Care organisations provide care in the home to enable carers to take a break. The needs of both the carer and the person they care for are assessed and regularly reviewed to ensure the service is tailored to the needs of them both. Other services typically available include:

  • group support for carers and the people they care for
  • young carers groups
  • social activities for both carers and the people they care for (together and individually)
  • special dementia projects.

Schemes work with over 43,000 individuals and their families, helping carers make a life of their own outside caring. Crossroads schemes employ 5000 trained professionals, providing flexible services to people of all ages, and with a range of disabilities and health conditions. These services are designed to meet the individual needs of each carer and cared for person. 

Find your local service on the Carers Trust website

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Guidance

Supporting Carers in Primary Care

Approximately one in ten patients registered with a GP practice is likely to be a carer. Evidence shows that there’s a strong link between caring for someone and ill health. So it's important to identify carers and make sure they can access a range of support.
Area of Care: 
Primary Care
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carers
I work in: 
Health carePrimary careHealth and wellbeingCarers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning for young carers
I work with: 
Adult carersYoung adult carersYoung carers
Location: 
England
Date Revised: 
Tuesday, November 25, 2014 - 10:45
Body: 

 

Supporting carers across primary care, from prescription pad to professional partnerships

Caring for someone is a major determinant of poor health

Approximately one in ten patients registered with a GP practice is likely to be a carer. Of these about a third will be caring for more than 20 hours per week, and a fifth caring for more than 50 hours per week. 

Evidence shows that there’s a strong link between PDF iconcaring for someone and ill health. As well as being at increased risk of exhaustion, depression, anxiety and stress, carers are more susceptible to physical injuries caused by incorrect or lone moving and handling. At the same time, many carers are older people and therefore more likely to have health conditions of their own or lack the stamina to cope with the demands of caring. 

"I’ve completely wrecked my back over the years moving my son. When he was little, it wasn’t so bad, but he’s 23 now and weighs over 14 stone. I have to stand behind the headboard and put my arms under his armpits to drag him up the bed. When the district nurse came round and saw what I did she was horrified." Carer.


Despite the strong like between unpaid caring and ill health, carers are often short of time and their attention may be focused almost exclusively on the needs of the person they care for. As a result, carers are less likely to find time to visit their GP practice when they are unwell or engage with services that can prevent ill health occurring. 

Some carers turn down the chance to have diagnostic tests or hospital treatment, particularly when they fear leaving the person they look after alone or without good quality support. And very few carers identify themselves as such to health and social care services with a view to accessing support.

“I’ve had this lump down below for a few months now, but with all that’s going on with mum at the moment, I’ve just not had time to get it checked.” Male carer.

Supporting Carers in General Practice: A quick-start toolkit for GP practice teams

If you work in General Practice, one in ten of your patients is likely to be a carer. Our quick-start toolkit offers you easy ways to indentify who your carers are and how to make sure they receive the support they need to prevent them reaching crisis point.  

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What helps carers?

While every carer and caring situation is unique, when carers are asked what would make life easier for them, or what has been helpful to them in the past, certain themes emerge time and time again. For example, when NHS England consulted with carers as part of their Commitment to Carers in 2013, carers said:

  • Recognise me as a carer but also as a parent, partner, child, relative, friend and member of my local community.
  • Share information with me and with other health professionals.
  • Signpost me to information and help link professionals together.
  • Make sure care is flexible and available when it suits me and the person I care for.
  • Recognise that I may need help, not just as a carer but in looking after my own health and wellbeing.
  • Respect me and involve me as an expert partner in care.
  • Treat me with dignity and compassion.

Based on carers’ own words in NHS England’s & NHS Improving Quality’s Commitment to Carers 2014.

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Supporting carers starts with recognition

Before carers can be offered support, they must first be identified. Because carers often accompany the person they care for to medical appointments or are present when community nurses make home visits to housebound patients, staff working in the NHS are ideally placed to identify them. 

In fact, many healthcare staff, including non-clinical staff working as receptionists in GP surgeries, already know which of their patients are carers. What’s more, carers often hold NHS staff in high regard, so a recommendation from a health professional is likely to be taken seriously and acted upon.  

Research suggests, however, that some people are deterred from engaging with carers because:

  • They are unclear about what kind of services are available to carers
    Staff wouldn’t be expected to have detailed information on carers services, but simply an overview of what’s typically available, such as the ones set out on this simple carers services flyer. 
  • They feel uncomfortable approaching carers in case they ‘say the wrong thing’
    Avoiding using the word ‘carer’ is advisable and asking a few exploratory questions instead is unlikely to cause offence. 
  • They fear it might lead to a much bigger conversation discussing topics on which they lack expertise 
    No-one would expect healthcare staff to have an in-depth knowledge of carers’ benefits and services. All they need to know is how a carer can get in touch with someone who does – usually via their local carers centre or scheme. Carers services will have leaflets you can hand out inviting carers to get in touch.
  • They don’t have enough time to talk to the carer 
    It’s best to be honest and explain to the carer that you don’t have much time to spare but that you know that there are people who not only have the time but also the expertise and hand them a leaflet from your local carers centre or scheme. 
  • Health professionals are respected by carers and ideally placed to help them​
    A significant number of carers say that it was only when a trusted healthcare professional suggested to them that they were a carer that they finally acknowledged the impact caring was having on their life. 

Some carers talk of a ‘light bulb moment’ when a nurse turned to them and said. “And how are you feeling? How is everything affecting you?” Similarly, people are often surprised to learn that there are services available to them, as carers, when so much of their time is spent arranging and co-ordinating services for the person they look after.

So the overriding message to healthcare professionals is that while displaying posters and leaflets inviting carers to self-identify can be helpful, the most effective way of identifying carers is through proactive engagement.

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Further guidance

Carers Trust worked with the Royal College of GPs to develop a best practice guide - PDF iconSupporting carers - an action guide for general practitioners and their teams.

For further guidance on how to support carers in general practice – read the carers support page on the Royal College of General Practitioners website

For online resources on how nursing teams can support unpaid carers, visit The Queen's Nursing Institute Carers Project Resources section and the Royal College of Nursing's carers and families page.

Carers Trust has worked with the Department of Health and other partners to develop a new professional pathway which provides a framework for district and general practices nurses on which to develop new ways of working, strengthening partnership approaches and providing personalised health care for carers.  

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Measuring impact 

The PDF iconAdult Carer Quality of Life Questionnaire, published by Carers Trust in association with the University of Nottingham, is a simple 40-item instrument which measures a carer’s quality of life in eight areas:

  • support for caring
  • caring choice
  • caring stress
  • money matters
  • personal growth
  • sense of value
  • ability to care
  • carer satisfaction.

It can be used on a one-off basis for the purpose of an assessment, or as a pre or post intervention tool to measure change and the impact of support.

The Carers Outcomes Star measures and supports progress for carers towards self-reliance or other goals. The Stars are designed to be completed collaboratively as an integral part of key work. It consists of a number of scales based on an explicit model of change which creates coherence across the whole tool and a star chart onto which the carer and support worker plot where the carer is on their journey. 

PDF iconHow to support carers is a self assessment tool developed by the Improvement and Development Agency. It measures how your local authority is doing in relation to developing an effective multi-agency approach to supporting carers. 

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How-to Guide

Identifying carers

Carers are not a generic group, with common circumstances and problems. Staff should be trained and encouraged to avoid stereotypes.
Area of Care: 
Primary Care
Outcomes: 
PreventionWellbeingCarer awarenessIdentifying carers
I work in: 
Health carePrimary careHealth and wellbeingCarers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning for young carersCommissioning
Location: 
England
Date Revised: 
Tuesday, November 25, 2014 - 10:45
Body: 

Carers are not a generic group, with common circumstances and problems.

Avoid stereotypes

Staff should be trained and encouraged to avoid stereotypes. Carers can be young, can be parents, and can have learning difficulties and so on. 42% of carers are men and 18% of carers look after more than one person.

There may be more than one carer involved in looking after a particular patient. Each carer may have very different needs and views. They may even be in conflict with each other.

Mutual caring

There will often be ‘mutual caring’ arrangements. An elderly couple will often be carers of each other, as will an elderly parent with an adult child with a learning disability.

Sometimes the patient may not be keen on their carer being identified and classified as such, for various reasons.

The main, or only, carer may not necessarily be the next of kin.

The carer may be registered with a different practice. This, of course, does not stop the practice communicating information to that practice, with the permission of the carer.

You may also want to develop a system with your local carers centre whereby they let you know which of your patients are carers.

Joint working

There are various models of joint working between carers centres and primary care. Many projects use primary care link workers who work closely with individual practices. By contrast, other centres have worked more closely with community nurses rather than directly with GPs, and also find this to be very effective.

Once you’ve identified that a patient is a carer

  • Establish the level of caring commitment and support.
  • Gain consent from the carer to be recorded as carer.
  • Always ask the patient if they are happy for health information about them to be told to their carer. 
  • Develop a carers’ register by marking the personal record of those carers identified.
  • Give information to the carer about the range of support services that are available to them, both in the surgery and from outside agencies, especially the details of the local carers centre.
  • Carers should routinely be informed that they can ask their Local Authority for a carer’s assessment.
  • Give the carer appropriate information about the condition and health needs of the person they care for.
  • Give information to help them with regard to the kind of care they may be providing, such as administering medication, moving and handling, PEG feeding, supporting someone with a severe and enduring mental health condition.
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Guidance

Supporting carers who want to participate

Carers involved in planning or training will appreciate having the chance to share their experiences with other carers or professionals involved with carers support. This can also help individual carers to have a less personal and more representative approach.
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carersCarers in employment
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingCarers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning for young carersEmploymentSocial careEducationCommissioning
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 08:00
Body: 

Just like other users, carers should be offered support to have a strong voice. This can be through:

  • language support (including for blind, deaf, deaf blind, hard of hearing)
  • accessibility of any venues
  • accessible websites.

Carers involved in planning or training will appreciate having the chance to share their experiences with other carers or professionals involved with carers support. This can also help individual carers to have a less personal and more representative approach.

This training can be facilitated through the carers centres and schemes or carers support organisation.

Hints and tips for including carers

Carers may need support to get involved. This should include:

Timing and location of meetings

These may need to be varied to meet the needs of all the carers. It may be easier for some carers in the middle of the working day and others may prefer weekends. The venue needs to be easily accessible by car or on public transport. Offer to reimburse travel expenses.

Alternative methods of having their say: not just using meetings and events

Try having a webcast for those who cannot attend, or at least a record up on your website so that carers can email comments or votes. Visit the good practice examples page to see for how one local authority did this.

Respite care

Some carers may need to make arrangements for the person they care for to be looked after while they are at the meeting. This will generally be charged for, so it is helpful to make it clear that you will reimburse the costs incurred.

Paying carers

A small fee recognising the expert contribution made by a carer is in line with arrangements made for service users who are consulted or used for training in similar circumstances.

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Guidance

Planning for good carer involvement

Involving carers is not just about consultation, and it is not about one way of doing things. Use a wide ranging approach so that carers can pick who they engage with to maximise the participation of a wide range of individuals.
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carersCarers in employment
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingCarers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning for young carersEmploymentSocial careEducationCommissioning
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 08:00
Body: 

Involving carers is not just about consultation, and it is not about one way of doing things.

Use a wide ranging approach so that carers can pick who they engage with to maximise the participation of a wide range of individuals.

Planning carer involvement

With commitment at a senior level it should be possible to:

  • Recognise carer participation as ‘core business’ and allocate a budget and other sufficient resources, like staff time to do it effectively.
  • Use local carers’ organisations, like carers centres and schemes to help you.
  • Include carers who may face multiple types of oppression in their wider lives, such as black, Asian and minority ethnic carers, lesbian, gay, bisexual and transgender carers and carers of those who misuse alcohol and substances. Identify hidden carers to counteract this.
  • Inform and educate people about why they should get involved.

You could also:

  • Provide all the information that lay people need to participate on an equal footing with others.
  • Try to make all information clear and jargon-free.
  • Develop feedback mechanisms to ensure carer input makes a difference to service delivery.
  • Develop tools to evaluate the effectiveness and impact of carer participation; what works and what does not, what barriers are there.
  • Use the internet and email to involve carers who may not be able to get to events and meetings.

Engage and support carers

Finally, do not underestimate the time needed to fully engage and support carers and be prepared to repeat events to ensure as many carers as possible can participate. Many carers will sometimes have difficulties in keeping appointments.

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Toolkit

Involving carers in planning

People performing a role usually best understand it. Talking to carers can often give you information about the services you provide that you could not get in any other way.
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carersCarers in employment
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingCarers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning for young carersEmploymentSocial careEducationCommissioning
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 08:00
Body: 

Why involve carers?

People performing a role usually best understand it. Talking to carers can often give you information about the services you provide that you could not get in any other way.

They are your key partners and can frequently become patients themselves when unsupported. All recent legislation on health and social care emphasises the need to involve users and carers in the planning and development of services.

What should carers be involved in?

Training

Carers should always be involved in any training on carer awareness. Carers’ experiences tend to be personal and not shared with the world. Much of what they do takes place at home. Their timetables are dictated by the needs of the person they care for and services they receive.

Carers can also usefully contribute to other forms of training where they can offer a unique perspective through their personal experiences – for instance:

  • expert patients programmes
  • person-centred planning
  • community services.

You may think you know what they do, but it is easy to be shocked and surprised by what they can tell you about the reality of their lives. There is no better way of understanding carers than listening to them.

Planning

As frequent users of services, most carers have expert knowledge of both Primary Care and Hospitals, how they run and what might help them to work better from a patient and carers standpoint.

Carers also know better than anyone what their personal wants and needs are.  When working in a public/ charity sector the experience of the carer needs to be acknowledged and drawn from when planning new projects or strategic objections.

Involving carers – individually and collectively - in planning for changes and new services can include their unique perspective.

This can be done by:

  • having a carer representative on planning groups
  • through patient and public involvement structures
  • questionnaires
  • large scale consultations
  • through collective structures such as carers’ forums.

How do we find the carers to get involved?

Your local carers centre or carers support organisation can help you to find carers to be involved in training or planning.

Practical issues

Carers may need support to get involved. This could be:

Timing and location of meetings
This can be critical to the ability of carers to attend andparticipate. It is usually easier for carers to be available in the middle of the working day. Ideally the venue needs to be easily accessible by car or on public transport. Many carers are on low incomes so it is helpful to offer to reimburse travel expenses.

Respite care 
Some carers may need to make arrangements for the person theycare for to be looked after while they are at the meeting. This will generally be charged for, so it is helpful to make it clear that you will reimburse costs incurred.

Support 
Carers involved in planning or training appreciate having the chance to share their experiences with other carers or professionals involved with carers support. These opportunities also help carers to have a less personal and more representative approach. This can be facilitated through the local carers centres and schemes

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Everybody is different, but experience shows that as a group carers might be involved in:

  • planning services
  • developing strategies
  • carer awareness training
  • Training of professionals - generally both in person and through the use of recorded material (so long as it remains relevant).

Involvement

Individuals might be involved in any of the following:

  • carers forum
  • carers sub-group of local implementation team
  • joint improvement team
  • cancer and palliative care review board
  • board meeting, for example, joint health and social care
  • advocacy partnership group
  • Carers modernisation team.

They might also want to be involved in:

  • parent-carers forums
  • mental health carers forum - including acute inpatient forum
  • carers strategy group
  • multi-agency carers strategy group
  • carers sub-group of partnership board
  • health and social care improvement board
  • forums open to carers of older people, people with mental health problems, and people with learning and/or physical disability
  • Carers strategy group – including legislation working group.

Carers open day

An example of good carers involvement was when St Lukes Hospice in Harrow held a carers open day inviting both patients and carers. The open day addressed practical, legal and financial issues, as well as looking at relaxation methods and nutrition.

There were group sessions to tour the hospice which encouraged carers to ask those questions they were afraid to ask. This really broke down the barriers and St Lukes’ now regularly uses input from carers in strategic development of their services.

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How-to Guide

Good practice examples of consultation with carers

The Carers Hub site is an initiative from Carers Trust to inform the commissioning and development of personalised services for and with carers by providing a central point for information sharing.
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carersCarers in employment
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingCarers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning for young carersEmploymentSocial careEducationCommissioning
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 08:00
Body: 

Good practice examples

Below are four examples of good practice in carer involvement and consultation.  

Carers Strategy Consultation and Conference

The conference, which took place in November 2006, marked the end of a major six month consultation period on the Carers Strategy and was a huge success with 39 carers and 50 professionals from both the statutory and voluntary sector attending the conference at an accessible venue.

The conference was a chance for carers to hear the progress made and put their opinions about the right focus for 2007-08 to help carers stay healthy and have a life outside caring. They were also able to help plan for the next five years.

For the first time, the conference was broadcast live over the internet. This meant carers who were unable to attend in person, could still participate in the event. The webcast increased the number of people who could share their views on improvements for support for carers.

Along with individuals viewing at home on their own computers, there were opportunities for carers to watch the conference with other carers at six other accessible venues in the County (three Carers in Hertfordshire centres, two Age Concern centres and at Watford Asian Community Care).

People were able to send comments online and some of these were shared at the conference. At its peak 180 viewings were recorded and many comments were made both during and after the event on a dedicated webpage.

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Carers Questiontime

Dundee Carers Centre hosted a Carers Questiontime event during Carers Week giving carers a chance to pose questions to a panel of local statutory and voluntary sector professionals who work in the field of carers’ issues.

It gave carers a chance to ask questions about local issues such as emergency respite care, free parking at the hospital, changes to day care services, forward planning for families with disabled children, as well as expressing their views about wider issues such as the low level of Carers Allowance and carers in employment.

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Stakeholders Event

Lanarkshire Carers Centre introduced an annual Stakeholders Event alongside their AGM. This event gives carers a chance to comment on the services they have received from the carers centre over the previous year and express their views on areas for future development.

Professionals from the Local Authority and Health services attend along with local partner organisations, to listen to the views of the carers who attend. The carers centre uses the report from this event to inform their strategic planning and work plans for the forthcoming year.

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Good practice in joint working - Dundee partnership

A married couple moved to Rockwell Housing, a new partnership arrangement between a housing association and the social work department, with a social care team on site. The facility included a number of flats for two people as well as one person flats and this enabled the couple to remain together. The husband was able to continue caring for his wife who had significant personal care needs, with additional support from the care team on site.

Information sharing between agencies to ensure seamless care was underpinned by several policies and protocols such as the NHS Code of Practice and consent forms as part of the Site Specific Assessment process.

There was an impressive range of developments to improve care and treatment, such as the redesign of the Intensive Care at Home Service, the Lochleven intermediate care facility, the Chinese lunch club, Rockwell housing with care and the planned joint equipment store.

Further information about this partnership working can be found on the Scottish Government website.

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Key Info

Carer Involvement

Carer involvement and participation means carers being fully involved in service design, delivery and review – not simply relying on consultation. It places carers in a much more active role and should be based on power sharing.
Outcomes: 
PreventionWellbeingIntegrationHealth inequalitiesCarer awarenessIdentifying carersCarers in employment
I work in: 
Health carePrimary careHospitalsMental health careHealth and wellbeingCarers servicesCarers involvementCarers breaksInformation and adviceCommissioning for carersCommissioning for young carersEmploymentSocial careEducationCommissioning
Location: 
Whole UK
Date Revised: 
Tuesday, November 25, 2014 - 08:00
Body: 

Carer involvement and participation means carers being fully involved in service design, delivery and review – not simply relying on consultation. It places carers in a much more active role and should be based on power sharing.

Why involve carers?

Involving carers in planning and improving services makes good sense: they understand their needs and role. Carers undertake tasks and duties that most people don’t have the first idea about.

Talking to carers can also provide feedback about services that you could not get in any other way. Apart from their obvious knowledge about their own needs, carers are very often best placed, next to the person receiving care themselves, to talk about the needs of services users.

Carers should be key partners in planning and commissioning not only carers’ services but also services for the person being cared for.

Further information

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