Response to Consultation on the Draft Care and Support Bill incorporating responses from carer focus groups and local Councillors
The key points identified by our carers are:
(a) Recognition of how caring affects our lives, health, finances.
(b) Better signposting of support services by NHS staff
(c) Regular / separate carer need assessments
(d) Standardisation of carer need assessments & support services – an end to postcode lottery
(e) More emotional support – face-to-face & via help-lines
(f) More training in moving / handling / communication, medicines
(g) More peer support to share tips etc.
(h) Carer counsellors to help deal with relationship issues, loss etc.
In response to the aspects of the Bill which affect carers our group and in discussion with their local councillors, the following insights, suggestions and conclusions were collated:
Identification and Recognition – this is an absolutely vital area in order for any of the other changes/recommendations within the Bill to be possible and it is an area which we believe needs strengthening.
With the definition of regular and substantial having been removed for the amount of caring input there is now a suggestion of eligibility criteria for access to services but still no indication of what constitutes a ‘carer’ in the first place. The term needs to be reclaimed from the confusion currently with a ‘paid care assistant’ role.
Rather than judging whether someone is ‘a carer’ based on input/levels/hours of caring could an outcomes/impact framework be devised to identify a carer based on the impact the role is having on their lives rather than what they are actually doing as this would be a fairer indication.
Our carers are worried that they may not even be identified as carers, nevermind receiving the levels of recognition and respect as expert care partners that they deserve.
“I would like to know how much care I have to give before I qualify for help.”
“We wish we weren’t taken for granted.”
“I want others to listen to me more – I’m an expert caring alone at home but not when my husband goes into hospital.”
The latter quote from a carer also shows the need for much closer links to health than are currently included in the Bill. There are a number of reasons why this is important:
- Integrated care and support is the main focus for locality teams on the ground at present and therefore it seems logical that any changes to the processes/statutes relating to this should have am integrated approach at the heart
- Clinical Commissioning Groups will be a new and powerful group and currently the commissioning framework which is guiding their work has no mention of the word carer at all. In this case it is possible that GPs and primary health care teams could feel completely absolved from responsibility of identifying (and supporting) carers whereas in actual fact they have a critical role to play. Many carers express dismay that their GPs do not recognise them or signpost them for support, a number have had unpleasant experiences of taking the person they care for to appointments and their expertise and vital role is simply not recognised or appreciated.
- Finally Social care will only come into contact with 5% of the population in a given year and therefore whilst we approve of their being given a broader role and more responsibility on them to assess and support carers without the identification and throughput of carers for assessment and support coming from health this will be a missed opportunity for improving the lives of carers.
“It’s important that doctors, nurses etc. know how we can get help.”
In actual fact we would argue that carers are currently ‘grouped’ if not ‘merged’ into the people they care for. It is rare to see a statement about carers in their own right – much more regularly seen is ‘patientsandcarers’ or ‘service usersandcarers’
We believe it is vitally important for carers to be recognised in their own right.
“As a carer, I want to have my own assessment…”
Carers should have their needs assessed SEPARATELY from the person they care for in order to be able to be open and honest about their feelings and ability to cope. Undertaking joint assessments often means carers feel obliged to agree with decisions or statements made by those they look after or professionals undertaking the assessments.
Portability and Standardisation.
The aspect of portability is very helpful and removes elements of the postcode lottery which previously existed. In order for this to happen there needs to be an increased standardisation of assessments across geographies and disciplines. In addition there needs to be standardisation of the packages of service available.
“I want to know what services are available when we need them.”
There is also an opportunity here to alter the unfavourable perceptions created simply through the unhelpful and off putting terminology ‘Carers’ Assessment’ – many carers are concerned that the process is looking at their ability to care and to ‘test’ them in a negative, non-constructive way. To alter this to be a Carers Needs Assessment or a Carer Support Assessment would make the whole process more positive from the outset.
However, on the point of take up there are some further points to make:
The assessment needs to be useful, relevant and have outcome sand services attached – this brings issues of determining what is a ‘carer’ service and this will be more relevant and crucial if charging for carer services is being introduced.
“As a carer, I want to have my own assessment, and to be confident that it will result in me getting some help.”
The assessment as currently delivered offers only a snapshot in time and could be very different depending if carer and/or cared for are having good or bad days. Perhaps some aspect of ongoing self assessment could be introduced over a period of time before a formal assessment is carried out to give more of an accurate indication
“I would like those who plan services to understand that short breaks are not the only answer, we have other needs, too.”
“We know what we need. I wish those who plan services would let us help them.”
This is a very complex area and needs careful consideration.
Respite and Sitting services are currently the most common form of provision offered if a carer is seen through an assessment to be struggling. However these are services TO THE CARED FOR and therefore only the cared-for’s income should be assessed – if this alters then the carers income could be considered too.
Rarely a carer is offered some practical assistance with household tasks – once again it is debateable whether these are services to the carer if they are required as a result of the carer having too much else to do for the cared for person to find time to do the additional tasks.
Actual services to carers as requested by the carers we involved in our groups and talking to local councillors include:
- More emotional support – face-to-face and via help-lines
- More training in moving / handling / communication, medicines
- More peer support to share tips etc.
- Carer counsellors to help deal with relationship issues, loss etc.
Emotional support – somebody to talk to face to face and share concerns and issues with is absolutely vital for carers and is what used to be delivered by Carers Organisations. However most of the funding for this type of service has been removed having been branded as ‘tea and sympathy’ and as actions which create ‘dependence’. The carers we report dispute this concept – it is vital to them to know there is someone at the end of a phone who can listen non-judgementally, understand and communicate clearly.
Training – following on from the above comment many carers specifically want training in aspects such as moving and handling, communication skills, medication handling skills etc. They are happy to care and often do intensive amounts of caring tasks which previously would have been carried out by health/social care professionals however in order to undertake these activities confidently and safely they want the same access to training as those professionals and currently this is either completely unavailable or is too expensive to be accessible to most carers.
Peer Support – opportunities to get together with others to talk and share tips, solutions etc. Carers are the experts and carers can often tackle, challenge and solve many concerns and issues amongst themselves when they are given the opportunities to come together and facilitated to discuss topics and situations.
Listening services specifically for carers – many carers find (after extensive waits for NHS services) the support given by a generic counsellor is not suitable for them as carers, particularly in aspects such as relationship support and care planning help. Specialist carer services “understand” better.
- surveys posts