Care in your own home: do you know about the range of options available?

Julie Wainwright

By Julie Wainwright, manager of Midland care and support advice service

We speak to hundreds of people every month who are looking for help and advice on care options. One of the major themes we have seen recently is this: people contact us because they are worried an elderly relative isn’t managing in their own home. They ask us about care homes because they recognise their relative isn’t coping and things may need to change. There is also, commonly, strong emotions about the idea of a move into a care home: guilt, worries about how the relative might adjust, concerns about how it would be funded. We often say: have you thought about a package of care in your relative’s own home? It is notable that often the answer to this question is – no.

Why is this? Most people know someone who has moved into a care home, or are aware of a care home which is near to their home. The agencies who provide packages of care for people living in their own home are lower profile and lesser known. It follows that there is also less awareness of what packages of care in your own home can be. For example, in many cases, it now costs slightly less to have live-in care in your own home than equivalent weekly fees in a nursing home. Live-in care involves having a carer living in your own home to provide 24-hour care and support, seven days a week. Often, two carers share responsibilities and between them, offer 24/7 support. Live-in care can be a very good option if a couple wants to continue living together but one person needs high levels of nursing care. Having the support of professional carers allows family members to focus on their relationships, while nursing and personal care tasks are fulfilled by professional carers. Live-in care is also an option people are turning to if they live in rural areas and want to stay in their own home: it can be very difficult to find carers willing and able to travel long distances to provide parts of a package of care at home. Having live-in care can be a solution to the challenge of organising care in remote areas with long travel times.

Sometimes, when people ask about care homes, they are really concerned about something else. For example, we often speak to people who are worried about an elderly parent living alone. They tell us: we both work full-time and we try our best to visit Mum or Dad, but they are lonely and spend too much time alone. Many people are not aware of all the different options available. Care agencies can take elderly people out to go shopping, take them to participate in clubs and activities and provide companionship, such as visiting and supporting them to play board games or undertake a craft. Care services offer much beyond meals, washing and dressing.

We can advise you on funding for care in your own home, explain the rules and regulations and how to organise a care needs assessment. If you are self-funding (paying for your own care), although this will have financial implications, it does mean you will have a wide choice of services. We can help by identifying what is available in your area and organising a package of care for you if you wish. Our advice and support is completely free to the families and individuals using our service and we have been helping people choose and arrange care for more than 20 years.

We helped Janet Baker to find a care home for her Mum six years ago. We were able to help her once again when, like many others, their money fell below the funding threshold which meant they faced unaffordable top-up fees

Janet Barker Care Home Top-Up Fees

Mum went into a care home six years ago after having a stroke. At the time, I had spent a long time searching for care homes and despairing about the lack of support, clear information and guidance. Then I was referred to Carehome Selection and given an adviser who became a life-saver; she was calm, knowledgeable and went out of her way to help. We visited several homes together and choose one which met Mum’s needs, providing the nursing and initial physiotherapy she required, but also a stimulating environment with plenty going on.

Mum is self-funding and after six years of paying care home fees, her resources fell below the funding threshold, which means you then have to pay third party top-up fees. It is a terrible situation: we were told we would have to top up her fees with £260 each week for her to stay in her care home and being pensioners ourselves, that was impossible. The social worker was helpful but told us there weren’t any care homes in the area that would accept Mum without top up fees. She couldn’t do any more for us except suggest we rang around care homes and tried ourselves. So again, I turned to Carehome Selection.

I spoke to an adviser called Jacqui who said “leave it with me”. She called care homes in the area where we live, Rugeley and in Brownhills, near to where Mum’s care home was located. She quickly came up with two homes that would accept Mum with a much more manageable top up fee of £50 a week. Jacqui offered to take me to visit one of the homes and so we travelled there together. The Matron was not there but Jacqui knew the home well and was able to show me around herself.

I liked the home, which is in Brownhills and is well suited to Mum’s needs. Nevertheless, I felt extremely worried about her having to move at the age of 93. We were due to go on holiday at the time and I was worried about Mum settling in while we were away; Jacqui even offered to go in and see how she was getting on. She really could not have done any more. We have the reassurance that it is affordable: the top up fees are paid by the council because they were unable to offer us anywhere which didn’t require top up payments.

Mum has been in the new care home for six months now and is getting on well. I imagine many families are facing this extremely difficult situation of having to move elderly relatives when their own money runs out. Once again, Carehome Selection came to the rescue and filled the gap in support. The social worker we spoke to was very nice, but they are very limited in terms of how much time they can spend supporting you. Whereas Jacqui told me I could call her any time, “day or night” and you know you have someone working away on your behalf who has a great deal of local knowledge and experience. I am very grateful for this much needed service and for the reassurance that you can go back to them again when new challenges arise.”

 

Is there any funding for respite care and who qualifies?

Replacement Respite Care

What is respite care (sometimes called replacement care)

Respite care, also called replacement care, is support which allows the carer to have a break from their responsibilities and have some time to do the things they choose. It may involve the cared for person spending a week or more in a care home, or more help may be given within the home, such as someone coming in to help during the night.

The carer’s needs assessment

The first step, for all carers, is to ask your local authority to carry out a carer’s needs assessment. The Care Act, 2014, which partly came into force in April 2015 has some significant implications for carers and respite. Local authorities now have a legal responsibility to carry out a carer’s needs assessment for anyone who requests it (regardless of their financial means).
The carer’s needs assessment is distinct from the care and support needs assessment of the person receiving care; it is focused on the person responsible for caring, considering their needs and the impact of caring upon that individual.

A carer’s needs assessment will be carried out by your local authority (or by a company working on behalf of your local authority) and may be face-to-face, by telephone or online. It will consider the impact providing care and support has one your well-being, what you would like to achieve and do beyond your caring role. If the carer is assessed as having eligible needs (according to national criteria) the carer must have their own support plan.

Who pays for respite care?

Whether you are entitled to be paid for respite care depends on the type of funding the individual and their carer are entitled to. There are different rules and entitlements to respite for those with continuing healthcare funding (NHS), those with a personal budget for care and support (local authority) and those who are self-funding.

Respite care for people with continuing healthcare funding

To qualify for continuing healthcare funding, an individual is assessed as having a primary health need, rather than social care (washing, dressing for example). Those qualifying are funded by the NHS and this type of funding is not means based. We explain the continuing healthcare assessment in more detail here.

Respite for primary carers is considered as part of continuing healthcare packages. Sometimes, people are given personal budget with greater control over how their budget is spent, including consideration of respite. If you have a package of care and support managed by your clinical commissioning group (CCG), this should be organised in close communication with you, including considerations about respite, so it is best to contact them in the first place if you are a carer and feel respite is needed. Here is an example of how we organised respite care for a carer whose mother was living with her and had continuing healthcare funding.

Respite care for people who qualify for local authority funded care and support

To qualify for local authority funded care and support, the individual’s care needs assessment will have identified eligible needs (under nationally set criteria). We explain more about this process in more detail here. If there are eligible needs, the local authority is obliged to draw up a plan for meeting those needs. However, this type of care, called social care, is not free; it is means tested, based on your local authority guidelines.

If you are a carer of a person receiving local authority funded care and support, it is advisable for you to have a carer’s needs assessment. Your local authority is obliged to carry this out. If your needs assessment shows an impact on your well-being and a need for respite, the funding for respite should come from the individual’s care and support budget, not be a cost for the carer (Care Act, 2014).

Respite care for people who are self-funding

Even if an individual is paying for their own care, some of the same principles of support still apply: the carer is entitled to a carer’s needs assessment which the local authority must carry out, including support and advice in terms of how the carer’s needs can be met. Although the local authority will not pay for services, they can signpost you to services, including ones provided without cost. Our care and support advisers specialise in helping people who are self-funding and our company has 20 years of experience in setting up respite care for families.
There are some excellent projects such as Shared Lives which provide respite care, where the individual stays with a family matched and assessed as being able to meet their needs, allowing their carers to have a break.

Emergency care replacement schemes

Many local authorities now have what is used called Emergency Care Replacement Schemes. Carers register with their local authority to ensure that if something happened to the carer which impacted upon their ability to maintain their caring responsibilities, alternative provisions could be quickly put into place. Some schemes also involve free services for carers, such as support groups and therapeutic sessions.

CHS Healthcare welcomes the 40 per cent increase in NHS funded nursing care payments to care homes

Dr Richard Newland NHS Nursing Funding

We welcome the significant 40 per cent rise in the amount the NHS pays to care homes for the cost of funded nursing care (FNC).

FNC is money paid by the NHS for the nursing carried out by nurses to support and care for residents in nursing homes (and care homes with nursing). The funding covers the nursing element of an individual’s care; it does not include other costs such as the accommodation and social care.

The standard rate has been increased to £156.25 per week (having previously been £112 per week) and the higher rate rises to £205.04 (previously £154.14), it was announced this week (July 13, 2016).

The changes are in response to an independent review by Mazars LLP, which recommended the 40 per cent rise. The increase for all eligible will be backdated to April 1, 2016.

Dr Richard Newland, chief executive of CHS Healthcare which provides the Care Home Selection service, commented: “This is very welcome news that recognises the extremely important work of nurses in care homes and the need for this to be properly funded.”

Professor Martin Green OBE, Chief Executive of Care England, the largest representative body for independent care homes said: “The care nurses give in nursing homes is a vital part of our whole care system and moving to a more realistic means of funding this care is an important step in the right direction. We must now also determine how the FNC should be reviewed annually going forward.”

To qualify for NHS funded nursing care, an individual should be resident in a care home that is registered to provide nursing care. The individual will have been assessed to see if they qualify for continuing healthcare funding and even if they don’t qualify for this type of funding, they may need nursing care and therefore be entitled to FNC. If you would like your relative to be assessed for NHS funding, the best place to start is to go to your clinical commissioning group (CCG) or ask your GP.

We explain more about the different types of funding for care homes here.

Jacki Bishop’s uncle had complex needs, was in hospital 50 miles away and needed a nursing home place. Jacki describes why our help was crucial.

Jacki & Paul Bishop Find A Nursing Home

“Uncle Albert is 96 and has paranoid schizophrenia, epilepsy and advanced vascular dementia. He is incredibly independent and until recently, was living in his own home in Portsmouth.

Albert never married, but lived with his sister until she died four years ago. At that stage, we took responsibility for Albert, as no-one else in the family was able/willing to do so. It proved very difficult as Albert’s condition started to deteriorate.

About ten times during the four years, we arranged home care for Albert, which fell apart because he frequently wouldn’t let carers into his house and in the early stages, when he was capable, would cancel the care package. He wasn’t managing on his own though and would call me up to ten times a day and call the police up to five times a day because he was suffering so much from paranoia.

We live in Guildford, Albert is in Southampton, so it was a round trip of 100 miles to see him. I have two A4 sheets of paper full of contacts who have been involved in Albert’s care – social workers, community mental health teams, hospital staff, GPs, carers and pharmacists and not a single one of them was communicating with any of the others.

From February, things rapidly went downhill for Albert, who was in and out of hospital with two failed discharges. Every time the phone went, my stomach would churn anticipating something else had gone wrong. At a Best Interests meeting in March, we were told Albert should have one more chance to live at home and if that did not work he would have to go to a nursing home.

We felt that was already the case but didn’t know where to start. We explained that we were doing everything we possibly could, but didn’t have the capacity or knowledge to take on the responsibility of finding a home. Nevertheless, I was handed a book listing different care homes and told to apply for Deputyship.

After the second failed discharge and a period in hospital during May and June, we agreed that Albert couldn’t return to living in his own home and we were told we needed to find a nursing home for him. I am the carer for my mother, I work and we have other family members who need support and we live in a different part of the country. I felt utterly desperate and overwhelmed and explained I could not do it.

The next day, I got a phone call from an adviser called Bob who introduced himself and said he understood my Uncle needed a place in a nursing home. We had a good discussion about Albert and his needs and Bob said he would find some homes which were suitable for him and had vacancies.

Bob came back to me and explained he had called 30 nursing homes and found three that were suitable. He asked whether I would like to look at them and whether I would like him to accompany me. I said yes and it turned out to be enormously helpful having him with mee. Going with him took away the stress of having to locate the nursing homes and if I forgot questions, he would ask them.

It was really useful too because the three homes were completely different. The first was a new, state-of-the-art facility with beautiful rooms. But I couldn’t see Albert there – it felt too isolated and quiet and just not the sort of place he would feel at home. The second home was at the other end of the spectrum, clean but pretty basic and very dementia based. It would have been quite challenging for some visitors, although because I work in healthcare, it didn’t trouble me and of the two, it would have suited Albert more.

We arrived at the third home at lunchtime. As a dietitian, I was pleased to see the food was obviously home cooked and their eggs came from their own chickens. They also had an aviary with canaries as well as hens, kept rabbits and encouraged the residents to help in the garden in any way they were able to. Everyone was very friendly and I was told that residents are encouraged to leave their room and sit and eat in the communal rooms. The residents seemed very settled and similar to Albert in his present condition.

After seeing all three homes, Bob asked what I thought. When I told him I preferred the third, he said he thought that was a good choice. It was very reassuring to have him alongside me – not influencing or pushing me but helping me to have confidence in the choice I was making.

> > Find a Nursing Home

Understanding frailty: a medical condition, not an inevitable part of ageing

Fit for frailty

We are all very familiar with the term ‘frail’ as a generalised description associated with age and poor health. Increasingly however, health professionals apply the term more precisely, to mean a specific condition which should be measured, diagnosed then carefully managed (just like a diagnosis of diabetes, arthritis or other condition).

Frailty is characterised by the following symptoms: weight loss, exhaustion, low activity levels, very slow walking speed, muscle weakness and poor ability to grip (this is known medically as the Frailty Phenotype).

The British Geriatric Society (BGS), the professional body for doctors, nurses and other professionals working with older people, is a leading advocate for better awareness and management of frailty. In their publication, Fit for Frailty, the society emphasises although the risk of frailty increases with age, not all elderly people are frail and some younger people, particularly those with long term health problems, can be frail.

Why is it important to have this better understanding and more precise meaning of frailty? There are two main reasons: the condition of being frail means a person is at risk of a relatively minor event having very serious and sometimes life-threatening consequences.

To take falls as one example of this: falls are an extremely common problem, with one in three people aged over 65 falling each year, rising to one in two aged over 80. What would be a very minor event for a younger or non-frail person, often has very serious consequences for the frail elderly: 10 to 25 per cent will sustain a major injury such as a hip fracture and for those aged over 75, falls are the leading cause of mortality (Chartered Society of Physiotherapists). There is a widely recognised spiralling of events: one fall results in increased frailty and loss of confidence, making further falls more likely. However, in a publication produced by Age UK (Falls Prevention Exercise – following the evidence) considering research from a number of different studies, suggests a tailored exercise programme for elderly people can reduce falls by as much as 54 per cent.

Similarly, the British Geriatrics Society (doctors, nurses and other health professionals working with the elderly) argues we should not see frailty as a fixed state but as a condition which can both worsen and improve (Fit for Frailty). Their report urges: “Older people should be assessed for the possible presence of frailty during all encounters with health and social care professionals.”

What does all this mean for families who are struggling to support an elderly relative still living in their own home? The advice from the British Geriatrics Society report emphasises frailty can escalate to a crisis point, when functions the individual was previously able to manage are no longer possible. The best place for the elderly person to be at this time is in a community setting, rather than an acute hospital, providing the necessary support is rapidly put in place. The society’s report states:

“If a patient is not severely unwell but is unable to maintain their usual status quo in the community due to a temporary change in their care needs, it is good practice and better for an older person with frailty to transfer care to a responsive community service rather than admission to hospital. This could be either a rapid response type ‘hospital at home’, or a community based intermediate care service such as a ‘step up bed’. There will be some variation in local schemes.”

In other words – elderly people who are losing their capacity to do things have the best chance of recovering that capacity to some extent if they are in their own home, or a community based setting. In the busy and unfamiliar environment of an acute hospital, it is much harder to regain lost capacity. But the frail, elderly individual must be safe above all and therefore community based support is vital.

Steve Spelman 10:10 am