I write this paper as the carer of a complex spinally injured Tetraplegic husband, the sister of a severely affected learning disabled adult, and the daughter of an adult with reoccurring, severe, complex mental health episodes.
Firstly to answer the specific questions posed by the commission.
1. How do you define residential care?
Residential care to me is the care provided in registered care homes, nursing homes, and hospices. These places are supposed to provide round the clock appropriate support for their residents and should provide a safe and comfortable place for those that need extra support that in their particular cases living in the community could not give.
a. Do you see extra care, retirement villages and other “housing with care” options as different by definition?
Yes, they should be but it is becoming apparent to me that because of the stigma of putting loved ones in care homes, many family members are inappropriately putting their relatives into places like this and then wondering why there are problems and sudden deteriorations in health.
b. What makes them different?
These extra care facilities and retirement villages should be for people that need minimal care and help for daily living tasks. They should be for people that like to be part of a community feeling but still want a high degree of independence. Excellent for people who live on their own to combat loneliness, make them feel safer as people they can call on if needed. Have replaced the old warden controlled bungalows in many areas. They are totally unsuitable for people with late on set dementia, or others that need round the clock support to stay safe. The latter, because they are not usually big enough dwellings to accommodate full time care worker teams or the medical equipment that comes with complex medical conditions.
2. What outcomes do people value when it comes to care and support?
Firstly that whatever environment a person lives in it supports them to live life to their fullest potential. That it gives the person as much choice as they can handle. Examples of, that they can choose, if appropriate to their condition, when to go to bed, get up, eat, what to wear, who to associate / socialise with, what hobbies to pursue. That the care and support provided is delivered by people trained appropriately to their need. For example people with dementia have access to specialist care-workers to help them through the different stages of the illness, people with learning difficulties have care staff that appreciate the need to constantly re enforce learning, people with a physical disability have care workers that understand the processes of SCI / MS/ MD / spina bifida / arthritis /blindness / deafness etc.
3. Can existing residential care deliver these outcomes?
Residential care in its current form has the general reputation that the Victorian workhouses had of the past. That of somewhere no one wants to end their final days in. I believe that things will have to change or people of the next generations given a choice will refuse to use them, which cannot be a sustainable business model for the future. People’s expectations of living standards have and will continue to change. Where in the past it was quite acceptable to live in a bed sitting room arrangement with a shared bathroom / dining facilities, many would find this arrangement if fully compos mentis totally abhorrent today. Residential care is also being used to paper over the cracks of the shortage of wheelchair accessible homes, this abuse needs to stop. Many generations now find communal living an anathema , people value their personal space, so the thought of communal sing-a-longs, being forced to associate with people they do not know, eat and live with strangers can be very frightening. The generations to come will value technology, [that technology use has changed the way we socially interact] like doing things many times on their own, will be more orientated towards their own inner circle of family and friends.
One other thing to note is that people are becoming more and more, savvy regarding medical knowledge and will not accept the poor standards of training and knowledge currently prevalent in the care sector.
So in short I believe the current model is unsustainable and will not deliver the expectations of next generations that end up needing to use such facilities.
4. Is there a difference between good residential care and other forms of good care, if so what makes it different?
Good care where ever it is delivered should be appropriate to the individual needing that care. The persons delivering the care must be appropriately trained. The best examples of good quality care are that which is delivered by family carers because they usually actually care about the outcomes of the cared for, somehow paid care-worker companies need to “bottle this” and replicate this among their workforces. Hospices seem to also have a generally good reputation, but since their clients usually have a poor prognosis this may be the reason, or it might be because they tend to be staffed with competent specialist nursing staff.
Good care is a person centred approach that recognises that we are all different with various aspirations. That provides appropriately trained staff, that are adequately supervised. That has measures such a password protected remote web viewing so that family can see what is going on in the facility at any time as a reassurance. Care provision that fulfils an individual’s hierarchy of needs as defined by Maslow, basic needs (e.g. physiological, safety, love, and esteem) and sometimes growth needs (self-actualization) as well or as Carl Rogers would have it that humans have one basic motive, that is the tendency to self-actualize, to fulfil one's potential and achieve the highest level of 'human-being-ness' they can.
Residential homes that provide services that actually do more than just house and feed their clients have to been seen as providing good care.
5. How will the role of residential care change in the future?
There will always be a need for establishments that provide care that would be provided in a hospital setting if they did not exist. I cannot see how residential care can change in being anything but the place of last resort for most groups that would need to use their facilities.
It is my view that residential care should only be used in the following circumstances,
· Where the individual’s current living arrangements would mean them coming to significant harm due to a mental incapacity.
· Where an individual actually wants to live in a communal setting and a retirement village / extra care facility is not appropriate.
· Where specialised end of life care is needed.
· Where specialised respite care is needed and only if not possible to be done in own home.
Since it is the home setting of last resort in most cases, it should be made as painless a procedure as humanly possible. People should be able to have their personal possessions, some personal space, access to technology such as Satellite/Cable TV, internet, phones etc. Personal bedrooms, bathrooms, sitting space. Should be more like a high class residential hotel. In the future I can see the need for these places to have unique selling points, such as hydrotherapy pools, access to physiotherapy, specialised OT sessions etc. to make them more palatable.
6) What future role would you like to see for residential care?
i) #1 priority where ever possible and if the individual wants it, care should be provided in a persons’ own home.
ii) More action needs to be taken by the government to ensure there are adequate wheelchair accessible homes available for people in the community to rent and that disability grants for people to adapt their existing homes are still supported and adequately funded.
iii) That there is a national set of training standards and qualifications for care workers.
iv) That care workers are considered in the same line of promotion as hospital health assistants and nursing staff, and come under the auspicious of the Royal College of Nursing in the setting of standards and codes of conduct.
v) A national framework is developed as to the necessary levels and standards of staffing needed to look after the various conditions supported in a residential care / nursing home.
vi) That someone is made responsible for taking an overview role of the types of care available in residential care homes large and small ensuring that they meet the spread of need in each geographical area. For example make it unacceptable for immediate
family to have to travel great distances to keep up a relationship with their LD kin.
vii) A designated person is made responsible for ensuring that extra care and retirement villages do not house people that are inappropriate to their level of expertise.
viii) That fire departments are stricter on the requirements for safe evacuation from shared premises housing people with particular needs, whether they be extra care facilities, retirement villages, care homes, or nursing homes.
ix) That council planners ensure that mobility restricted individuals are not housed in buildings where they cannot be easily evacuated quickly from in an emergency. Should be a maximum time limit for evacuation like an aircraft. That building owners conform to ‘excellent’ standards of maintenance, heating, ventilation, noise control, rubbish storage and collection.
I still firmly believe that moving into residential care will always be seen as the course of last resort for many. If the sector were developed carefully, taking into account the aspirations of the new generations, and so that no one that did not really need to be in such an establishment had choices of where to live, more people would be better accepting of the time when they became too ill / dependent to live on their own.
Let me use my knowledge of my own family to ponder the alternatives they currently have as an example of how things have to change.
1) My Severely Learning Disabled Brother.
My 47 year old brother has the mental capacity of a limited 2 year old having contracted TB Meningitis and epilepsy as a baby. He lives over 60 miles away from his family in a small residential home. The staff to care ratio is higher than some establishments, I believe it is 1 carer to 2 residents. The distance from family has severely limited the contact of family and made it impossible for me to maintain reasonable contact despite wanting to. Social services do make monthly runs to mother so that she can maintain some contact. He seems to be happy where he is, his care-workers genuinely seem to care about him. When he has not been happy in the past he has exhibited behaviour that lets us know that things are not well. Hand biting and self-harm being some examples. So well run and appropriate residential care in this case but too far away from his family.
2) My Mother with reoccurring mental and physical health problems.
My 75 year old mother lives with her partner who also has mental health problems in a tiny one bedroomed council provided bungalow. She suffers from acute episodes of mental health illness, where she becomes totally detached from reality, becoming a danger to herself and verbally abusive to those around her. She also has mobility problems caused by the excessive weight gain caused by the mental health drugs she is on and a stomach hernia / intestine problems. She likes living independently where she is when she is well. But if you were to visit their home it is quite obvious that they are not coping well, the place is dirty and untidy. She has a visit by care worker every third day to help her shower. It is my belief that she and her partner are not supported appropriately by the social care system. They would be better living on an extra care complex, where they could socialise, people could keep an eye on them regarding their mental states and help with cooking and cleaning.
3) My Husband with severe and complex physical medical problems.
My 69 year old partially tetraplegic, husband and I (46) live in a two bedroom first floor flat in an extra care facility. He has passed the assessment for NHS funded continuing health care (CHC) and is supposed to have a team of care workers to look after him around the clock, enabling me in theory to return to work. We have had problems with the provision of care workers from the onset of the award of CHC. We find it incomprehensible that having passed an assessment that proves an on-going medical need we have been supplied with minimum wage under qualified care workers, that lack the capacity to take on board the complexities of his medical needs. We also live in housing that is totally unsuitable / unsafe for a full time wheelchair user. We have been put under not so subtle pressure to dissolve our marriage and place my intelligent, fully mentally aware husband into a nursing home to save the authorities money. Instead we have struggled on at home myself, putting my own physical health at risk, being used as a human hoist because of the space/ safety issues with using an electrical hoist in such a confined area. My husband becomes very down with being confined to four walls every day and longs for the private use of a small garden. We are top of the rehousing list on health grounds but since there are not the suitable specialised properties available and the lack of willingness to find us a bespoke solution to our housing problem here we sit and have done for the last three years. We are currently trying to help ourselves by engaging a philanthropic property investor consultant to buy us a bungalow for us to rent, at first with an option to buy should I get back to the full time work I dream of. We can then apply for a disability grant to make the modifications we need to make. Safety net what safety net? So in our case residential care is not wanted or welcome at this time.
Finally, slightly off piste, as it were, if more people are going to end their days in shared facilities such as residential homes. Someone is going to have to do something about the inordinate numbers of care workers that smoke. Smokers and non-smokers cannot happily co-exist.