The law for carers has always been separate to that for the people they care for. Is it helpful to include carers in all the main provisions of the draft Bill, alongside the people they care for, rather than place them in a separate group?
This question relates to clauses 9-33
Where provisions pertain to both it may well be unnecessary to place Carers into a separate group. There can though be a blurring of the lines that takes place if Carers are grouped with the people they care for. Carers need to be recognised, respected and utilised as partners in care. They form part of both the preventative workforce and the care and support workforce. Of course their needs must be recognised and responded to and it’s very pleasing that this is being more-formalised, but their dual-role needs to be recognised.
totally agree with the comments you have made in this respect. Carers already feel that they have disappeared from society’s radar.
Very well put. Agree totally.
“Who will care for the carer?” This is a very important question as many face “burnout”, stress illnesses etc. What support will there be and who will pick up the peices of a broken life? Carers are the unsung backbone of our society. The more participation and support a carer gets converts directly to the wellbeing of the person cared for and is the greatest method of holding back the progression and misery of many diseases. Better recognition of the effort carers make both in financial terms and emotional support would go a long way towards the problems of the future and I believe that carers should be in the main provisions alongside those they care for.
The Riverside Group supports the move to the promotion of well-being and also the inclusion of carers.
The circumstances of Carers are different to that of service users and so should not be grouped together. Carers have needs in relation to caring and to be able to have a life outside of caring. Carers are recipients of care and support and also partners in care.It is harder to identify Carers than service users and so a focus on them is essential and not be lost in the term “people” as we often see. Charging Carers for service to help them continue caring is a nonsense and a muddle. If a Carer has been able to accrue any savings, surely they should be using them for their own needs in later life not see them dwindle getting help so that they can continue to save the country billions of pounds per annum – £119 billion in fact as last count. What happened to the concept of autonomy? This is offensive to Carers and more likely to push them into choosing to walk away – which would be more costly than providing a few hours of support. Is the government really going to risk Carers walking away and costing the State 24/7 x 7 days of care a week as opposed to a few hours of support a week to Carers at – for example – £50? Where Carers are unable to pay – they will struggleon regardless jeopardising their own health and well being – increasing the NHS costs. This is a mean and misguided intention. As is the intention to charge s.users and Carers for an assessment of need if they have savings above the threshold.If this Bill is intended to be preventive in nature – these charges will work against that aim.
I am appalled that Parent Carers and Young Carers are not in the scope of the Bill but will be served by outdated “rump” legislation. This not progress support to families one iota and set back their cause decades because of the confusion this will cause. Young Carers will be left to struggle.What happened to the concepts of a whole family approach; prevention; supporting the well being of adults; and equity ? – What a mess.
This Bill is disconnected from strategies such as No Health Without Mental Health and the lack of support to children and Young Carers will be contrary to the aim of stopping mental illness cascading down the generations.
NFOP welcomes the recognition of the needs of carers. It is particularly important where couples are mutual carers each having different needs and abilities.
We welcome the decision to include carers in all the main provisions of the Bill to ensure they equally receive the care and support needed. In clause 10, point 6, in carrying out a carer assessment, we would question whether there should be specific reference to consult ‘the adult needing care, if the carer asks the authority to do so’ as seen in clause 24, point 4 for preparing a support plan. The carer may wish for the adult to not only be present for the support plan but also the carer assessment and therefore the Bill should be consistent in those the local authority should consult.
Older people are at risk of abuse from their carers be it a family member or a member of the public.- how can we safeguard that vulnerable people ar not abused in their own homes? Training all Carers is essential be it in the home or Insttution.
Yes – it puts carers on the same footing as the people they care for
It makes absolute sense that the rights for a carers assessment and rights to services are included in the legislation. At present the law is confusing and relates to multiple statutes and doesen’t include the right to receive services. The legislation will not solve the resourcing issues, but will improve knowldege and clarity regarding rights.
The changes to the carers in this bill will have no effect for those not recognised by the Local Authority despite offering daily suport to their relatives.
A number of individuals who have suffered from Mental Illness for many years are reluctant to accept that they are cared for or supported on a daily basis by their parents. The Local Authority ignore the parents/carer and refuse to communicate with them or respond to letters of concern.
My son has a bicycle in his first floor flat, unable to use it, because the supported accommodation has failed to provide him with a secure area to keep it.
The Local authority state he is dealing with it himself. Five months later it is still in his flat, unused.
I was the carer representative on the Mental Health National Service Framework. Nothing has changed in ten years, for the better.
Carers are finally recognised with their own legislation. They should be included in this Bill as an individual Group encompasiing all types of Carers from Parent carers, Child carers of adult parents to members of the family who are Carers and friends who are Carers. They need to be recognised and be able to have a life of their own given the time and effort they put in supporting Service Users.
These comments are from Preston Learning Disabilities Forum comprising service users, carers and provider reps as well as some specific local authority post-holders
It was felt appropriate and that their needs will link directly for the “cared for”
It was also felt a good step for carers to have the right to services themselves following assessment of need
• The Social Care Institute for Excellence (SCIE) welcomes the proposal in the draft Bill for a significant extension to the rights of carers. Subject to certain conditions, carers are already able to seek an assessment of their own needs for support, but with no obligation on their local authority to provide for those needs. The duty to assess is retained in Clause 10 of the draft Bill, with fewer conditions; and under Clause 19, the local authority would have a duty to meet those support needs which meet the eligibility criteria, and a power in defined circumstances to meet needs falling outside them.
• SCIE thinks that it is helpful that carers are included in the same bill as the people they care for and welcomes the focus on provision for them in their own right. It is right that carers should feel entitled to support, and that the local authority acknowledges it has obligations to them. Their own needs for support, however, arise from the assistance they are providing on a voluntary and unpaid basis to the individual they care for. Where their assistance reduces the volume and cost of support the individual would otherwise need, then it seems reasonable to include the benefit to the local authority in the equation. National guidance on charging for non-residential care and carer support, would inform local authority decisions on charging carers and help provide a consistent and equitable approach.
To be clearer, – It is helpful for Carers to be recognised in the same Bill as s.users – agreed- and wonderful that the Bill will strengthen our rights to support; and discard the meaningless eligibility criteria for assessment of “regular and substantial” – moving to one that reflects the impact of caring on the Carer.
The question posed was about grouping Carers together in the Bill with service users ie as I interpretted it merging Carers and service users circumstances and needs together. Because the circumstances of Carers are different to those of s.users , it is essential that the differences are recognised and Carers have a distinct response in the Bill to our circumstances and needs.
All carers should be recognised and the ommission of Young Carers and Parent Carers must be amended.There is no mention of Parent Carers’ or Young Carers’ health and social care support needs in the Children and Families Bill and yet again they fall between Education, Health and social care ; Adults and Children’s services. Children and families need to be supported so that children don’t undertake a caring role.I don’t want to see my grandchildren become Young Carers – I want their disabled parent to be better supported but if the children decide they want to help out, that they are supported in doing so – not as it is now that they have to become a Child in Need to get help. I would like to see separate clauses that focus on Carers in the Bill – no blurring.
Charging is also on a different basis and this is what I find so muddled. If the State charges me for the help I need to provide care, my resources dwindle. These are not savings that can be replenished – I am retired on a low State Pension having lost a full pension by caring for a number of relatives when I could have been working in the job I loved in an NHS laboratory. Why should I be penalised by caring? I’d rather not care than have to jeopardise my own future care, by using up my savings. At some point I will have nothing – I will have been penalised by caring – so the State will have to help me then – so why not now? Give me some dignity please?
Equity has nothing to do with this – our circumstances our different to those of the service user – so don’t apply the same rules that charging is based upon. These were not designed to charge Carers and therefore do not reflect the issue of the lack of future atonomy that would arise if the Carer uses their resources in caring for another person!
There should not be different categories of “carers” any more than there should really be different categories of “cared fors”. If you give or receive help you fall in to either category. The most important thing is that Carers are recognised and get the support they need WHEN they need it.
To assess carers’ needs in conjunction with the needs of those that they care for seems to be sensible. However, there also needs to be provision to ensure that both carer and cared for has the opportunity to meet privately/separately with any assessor.
Following a consultation between carers and local Councillors the main points carers want the White Paper to deliver are:
- recognition of how caring affects their lives, health, finances.
- Regular assessments for both carers and cared for person. Carers must be given the opportunity to have their needs assessed separately and not as an ‘add-on’ to the cared fors assessment. The carers needs are very different and not always easily shared in front of the person they care for.
- carers assessments must be meaningful and deliver a service – not a ‘tick box’ exercise
- standardisation of carer need assessments and support services across the country – an end to postcode lottery
- better signposting of support services by NHS staff- to ensure that carers are identified at the start of their journey and not when the situation reaches breaking point
- more emotional support – face to face and via helplines
- more training in – moving and handling, communication, medicines
- more peer support to share tips etc
- carers counsellors to help deal with changing relationship issues, loss etc
- carers need information and knowledge
- carers should be treated as a professional partner in the care of their relative – they have a lot of knowledge of the cared for person which should be listened to – confidentiality should not be used as an excuse
- respite, although valuable in some circumstances is not the prime necessity for many carers – every day needs of emotional support are more important
- carers should be involved in planning and reviewing carers services – a seat round the table in commissioning
If local carers are valued… (quotes from carers)
“I would like those who plan services to understand that short breaks are not the only answer, we have other needs, too.”
“I want to know what services are available when we need them.”
“It’s important that doctors, nurses etc. know how we can get help.”
“As a carer, I want to have my own assessment, and to be confident that it will result in me getting some help. ”
“I would like to know how much care I have to give before I qualify for help.”
“I want others to listen to me more – I’m an expert caring alone at home but not when my husband goes into hospital.”
“We know what we need. I wish those who plan services would let us help them.”
“We wish we weren’t taken for granted.”
Following a consultation between carers and local Councillors the main points carers want the White Paper to deliver are:
- recognition of how caring affects their lives, health, finances.
- Regular assessments for both carers and cared for person. Carers must be given the opportunity to have their needs assessed separately and not as an ‘add-on’ to the cared fors assessment. The carers needs are very different and not always easily shared in front of the person they care for.
- carers assessments must be meaningful and deliver a service – not a ‘tick box’ exercise
- standardisation of carer need assessments and support services across the country – an end to postcode lottery
- better signposting of support services by NHS staff- to ensure that carers are identified at the start of their journey and not when the situation reaches breaking point
- more emotional support – face to face and via helplines
- more training in – moving and handling, communication, medicines
- more peer support to share tips etc
- carers counsellors to help deal with relationship issues, loss etc
- carers need information and knowledge
- carers should be treated as a professional partner in the care of their relative – they have a lot of knowledge of the cared for person which should be listened to – confidentiality should not be used as an excuse
- respite, although valuable in some circumstances is not the prime necessity for many carers – every day needs of emotional support are more important
- carers should be involved in planning and reviewing carers services – a seat round the table in commissioning
If local carers are valued… (quotes from carers)
“I would like those who plan services to understand that short breaks are not the only answer, we have other needs, too.”
“I want to know what services are available when we need them.”
“It’s important that doctors, nurses etc. know how we can get help.”
“As a carer, I want to have my own assessment, and to be confident that it will result in me getting some help. ”
“I would like to know how much care I have to give before I qualify for help.”
“I want others to listen to me more – I’m an expert caring alone at home but not when my husband goes into hospital.”
“We know what we need. I wish those who plan services would let us help them.”
“We wish we weren’t taken for granted.”
Derbyshire County Council strongly supports the development of a comprehensive framework of carers support. We have to date conceptualised this as a partnership in providing care rather than seeing carers as clients. On balance we would probably prefer to have them separated and to have a full recognition of the contribution which informal carers make to the sustainability of the adult care offer. There is a more fundamental issue which is that the cost of implementing the offer as set out in the draft would be hugely expensive and beyond the resources which are likely to be available.
It is a positive move to recognise the role played by carers. However, it should be recognised that in some instances the distinction between carers and service users may be more blurred and systems will need to take account of this. The distinction between parent carers, young carers and other carers seems to stem from the adult/children’s services funding divide – not carers’ needs. Some carers may be deterred from seeking help if they think they will be charged.