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

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.

Good practice examples

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

• Carers Strategy Consultation and Conference
• Carers Questiontime
• Stakeholders Event
• Dundee Partnership

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.

Back to good practice examples

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.

Back to good practice examples

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.

Back to good practice examples

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

• Benefits of involving carers
• Good practice examples of consultation with carers
• How will carers want to be involved?
• Involving carers in planning
• Planning for good carer involvement
• Supporting carers who want to participate

It takes strong commitment from board members, senior managers from health & social care, advocacy groups, voluntary groups and carers to fully involve carers - it’s not the easy option.

Involving carers also places a responsibility to feedback on what change has happened as a result or, if no change has happened, the reasons why not. But the benefits can be enormous. These include:

• Problems arising from proposed changes to services can be pinpointed in advance and avoided.
• The results of consultation can be used to help make decisions about policies, priorities and strategies.
• Services can be targeted more closely on providing what people want and avoiding what people do not want.
• Take-up of services can be improved, making unit costs lower, especially where there is a charge for services.
• User and carer satisfaction with services can be monitored over time, providing a useful performance indicator on improvements to the quality of services.

Carers who are involved in decision-making feel valued.

Find out more on our website Carers.org.

Find out about flexible working on our website Carers.org.

You will find information on carers and the workplace on our website Carers.org.

What employers should know

Key facts

• There are around seven million carers in the UK, of whom 4.27 million are of working age.
• According to the 2011 census, 42% are men and 58% women.
• Every year in the UK over 2.3 million adults become carers and over 2.3 million adults stop being carers.
• Three in five people will be carers at some point in their lives in the UK.
• Nearly one in eight workers is a carer.

There is constant change as people move in and out of caring – so the proportion of your workforce likely to be affected at some time or another will be large.

The peak age for caring is 45-64 – when many employees, after years of developing their skills and increasing their experience, will be reaching the peak of their usefulness to you.

Why should we care about carers?

Recognising that there are carers in your workforce, and supporting them to manage their caring responsibilities and work can:

• reduce stress and improve job performance
• improve job satisfaction
• improve commitment to the organisation
• decrease staff turnover.

How can we support carers in our workforce?

Recognise them

Unlike parents, many carers are invisible in the workforce, reluctant to discuss their personal situation and unaware of the support available to them.

• Quote “carers” specifically in policies and other documentation.
• Nominate a key contact in the workplace.
• Set up an internal carers group or forum – to allow carers to meet together occasionally – for mutual support, information sharing and to raise the profile of caring in the organisation. Depending on the type and structure of your organisation, this might be a face to face or virtual group.  Allow time for the carers you employ to attend the group.

Offer practical support through your employment policies and practices

Caring is often less predictable than child-care. Flexible working policies need to include the flexibility to change arrangements as caring responsibilities change. They also need to recognise the possibility of emergencies arising.

Implement flexible working policies compliant with the current law, and allowing as much flexibility for change as is consistent with business needs. Review all your employment policies to ensure they are ‘carer friendly’ – for example, does your policy on stress management recognise the complex linkages between work related and home related stress?  Also organise training for managers in carer awareness.

Ask them what will help them to successfully combine work and caring

The people who know best what will really make a difference to their ability to do a good job for you and keep up with their caring responsibilities at the same time, are the carers themselves.  There are often small and inexpensive things employers can do to help – such as:

• allowing employees to leave mobile telephones on in meetings in case of emergencies
• flexing start and finish times to help people deal with caring commitments before and after work
• allowing people time and access to a telephone to check on the person they care for from time to time while working. 

So ask them.  Surveys, focus groups and employee carer groups are all useful ways to find out what the carers you employ would value.

Then develop a specific Carers in Employment policy setting out the various ways your organisation will support carers in the workforce.

Inform them

The impact of caring can be much better managed and controlled if carers have good information about services and support available.

• advertise contact information about the local Carers Support Organisations
• share Carers Trust website links
• provide resources to support the internal Carers Group
• hold information events
• forge formal links with service provider organisations (including Carers Trust’s local Network Partners).