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Engagement exercise: key messages

Supporting people to identify themselves as carers early in their caring journey

People who look after a spouse, parent, child or friend might not always see themselves as a carer. It was widely reported that many informal carers do not actually see themselves as carers; rather they see themselves as a husband, wife, family member, etc. Carers felt that they needed support in recognising they are also (or will soon become) an informal carer and this is particularly pertinent early on in a carer’s journey.

“I do not automatically think – I am a carer – in the first instance I am a wife”.

Many carers are likely to have first contact with the health service. GPs and pharmacies are in a key position to make contact with hidden carers. Nearly half of all survey respondents believed that their GP is well placed to advise them about relevant services for carers.

Carers told us that they felt that the following people are well placed to support them to identify themselves as carers, as early on as possible in their caring journey:

  • GP’s and GP Surgeries
  • Community Health Workers (e.g. District Nurses, OTs)
  • Hospitals
  • Diagnosing practitioner (Consultant, Specialist)
  • Pharmacists
  • Other carers (informal and paid carers)
  • Voluntary organisations (e.g. CAB, Alzheimer’s Society, Parkinson’s UK, Age UK).

Provision of information to enable carers to access available support

Feedback from carers suggests that many carers are not aware of the support services that are available for them. Carers told us that they needed information about available sources of support, particularly early on in their caring journey.

“There is good help out there but how to know how to access it is the problem”.

“More information regarding what support is available and where to go for help”.

In addition, carers reported that there were a number of key “touch points” throughout the caring journey at which they should be supported to both recognise themselves as a carer, and be proactively referred to available sources of information, advice and support. Key touch points are:

  • GP visits
  • Immediately after diagnosis of the cared for person
  • Visits from Community Health Workers (e.g. District Nurses, OTs)
  • At point of assessment and/or review (social care and/or health) for the cared for
  • Hospital appointments / elective admissions
  • Visits to A & E and non-elective admissions
  • Hospital discharge
  • Approaching end of life (at palliative care stage).

We need to integrate the local carers support offer within key touch points (as identified by carers) in the local health and social care infrastructure, in order to support identification of carers.

Support services for the carer

In terms of provision of support direct to carers, carers told us that they required the following support to enable them to balance their caring roles and maintain a good quality of life:

  • A break from caring
  • Information and advice on all aspects of the caring role
  • Training, to enable people to confidently care
  • Emotional support
  • Peer support
  • Practical support to carry out day to day tasks; (e.g. with household tasks, help with form filling)
  • Personal budgets / direct payments – control over the support we receive.

Carers are a socially and demographically diverse group. Different groups of carers have different types of support needs and different preferences in terms of how they access support. Therefore, a range of support options need to be available for carers.

Peer support from people who understand can help many carers feel less alone. Others may not feel comfortable to open up or are unable to attend in such settings, preferring online support through social media, forums or helplines.

Support to be recognised and valued for their contribution and empowered and included as “experts in care”

Many carers indicate that they feel their own needs are successfully met if the cared for person’s care and support needs are adequately met.

“If you get their care right I am OK”.

However, many carers are spending a great deal of time trying to navigate complex systems in order to co-ordinate care and support services for the cared for person.

Carers tell us that they feel frustrated with the amount of time they have to spend and difficulties they face trying to navigate and negotiate a complex health and social care system with multiple points of contact, a lack of communication between different parts of the system, barriers to access and often long waiting times.

Carers told us that they need to be recognised for the critical contribution they make to the cared for persons overall care, and their experience and contribution should be valued.

Carers told us that they need to be more empowered involved in discussions and decisions about the care and support of the cared for and actively involved in care and support planning.

Carers told us that they need support to ensure that they are able to effectively navigate systems in order to co-ordinate care and support of the cared for person.

“Support to negotiate the system”.

“A point of contact to help navigate through the system”.

Carers also told us that they needed support to prepare for any changes that might occur (both planned and emergency).

Almost all carers told us that they were anxious about what care would be available for their loved one in the potential scenario that they are unable to carry out their normal caring through sudden ill-health.

Carers reported that this was a constant source of anxiety, which carers felt could be managed and minimised by having support to ensure they have a contingency support plan in place that would be initiated in the event of such an emergency.

Carers told us that, in order to address the issues highlighted above, they need support to ensure that:

  • Their right to accompany the cared for, and to be involved decisions about care and support (with the cared for person’s consent) is recognised and upheld by health and social care practitioners
  • They are involved in current care and support planning
  • They are able to effectively navigate systems in order to co-ordinate care and support of the cared for person
  • Offered support to plan and prepare for any changing needs of the cared for in the future (Advanced care planning and emergency/contingency planning).

As a result of the implementation of the Care Act all of the above are core outcomes of carers assessments where the carer is deemed eligible for care and support; however:

  • Many carers were not aware of their entitlement to request a statutory carers assessment
  • There was some confusion as to what a carer’s assessment was and what benefit to themselves carers could expect as a result of an assessment.

Carers stated that they needed support in terms of clarification as to the assessment and review processes, timescales, and what to expect as a potential result.

In addition, a number of carers told us that they had gone through a carers assessment however felt that there had been little in terms of a positive outcome for them or for the cared for.

“You go through all of this and what do you get at the end”?

“A carers assessment is important to have on record, but it feels like a tick box exercise when nothing comes of it and you’re just a statistic”.

“Some carers need full assessment whilst others, earlier on in journey, could receive a lesser assessment process, but with information as to when and who they should seek out for a full assessment”.

Carers support services that are “local and accessible”

Feedback from carers known to us reveals that the main barriers to accessing and engaging with existing carers support service are:

  • Being unable to leave cared-for person
  • Time of day support services are provided
  • Location and transport.

This indicates that accessibility of services is a key issue for many carers. Many carers told us that they were unable to engage with existing carers support services such as peer group support and training because of lack of access to replacement care.

Importantly carers told us that their ability to access face to face support (such as peer groups and training) could be supported by providing on site replacement care. This would enable carers to access face to face support whilst the carer is engaged in alternative meaningful activities on the same site in a separate room.

Carers also told us that they would like to receive different kinds of support through the different channels, for example Carers reported that they want to be able to access:

  • Written information and advice online 24 hours a day
  • Emotional/ crisis would preferably be available 24 hours a day or outside normal office hours; (preferably telephone helpline)
  • Support such as training, and elements of emotional support, peer support, and advice and guidance, on a face to face basis

Preferably on an outreach basis (i.e. in the carers home), or in a centralised location, such as their local GP surgery or a local carers centre, during the daytime, and in the main on a weekday.