I am an Expert-by-Experience and undertake
inspections with Care Quality Commission (CQC) inspectors. Inspectors have a
duty to ensure that all medical and social care facilities and services meet a
set of mandatory regulations that focus on Standards.
I usually accompany inspectors who inspect
residential, nursing home and hospice settings and all visits are unannounced. The buildings, environments, together with the
services that people may need and receive, may vary greatly. For example, some
homes offer en suite facilities and single and double bedrooms, others either
no or just one or two en suite rooms and only single occupancy. The services,
too, vary and the choices people can make may rest on how much they can afford
to pay, the home's location, their network in terms of relations and friends.
Where relatives live and how much control they have over a person's ability to
control their own lives, particularly in terms of their financial position, can
make a significant difference to where they will reside and what services and
support they can expect.
On inspections I am charged and want to focus on
the quality of peoples' lives within these settings. As a disabled person,
people are generally pleased to communicate with me because they recognise I
may have some understanding related to their experience. One of the main topics
of conversation is around ordinary, day-to-day living and how it has changed
for them. Tasks, such as the ability to make decisions and act upon them
spontaneously, include buying and writing greetings cards, making a telephone
call, sorting and hanging clothes in their wardrobe, changing their mind over
what to eat for lunch or eating an additional snack. Repeatedly people say they
feel 'imprisoned' because they cannot go out through the front door without
assistance and days can go by without feeling fresh air on their skin or being
in touch with nature. People say they feel isolated from family and friends and
from their local community, enjoying leisure activities they once enjoyed and
even having the services from a familiar GP.
In some residential settings much emphasis is
placed on 'person-centred' care, support and activities and emphasis put on
equality of opportunity and integration. For many people, this approach remains
a pipe dream. This is where personal budgets could significantly change
peoples' lives and experiences within these settings. A part of the fee that
people pay, usually on a monthly basis, could be retained by the individual or
relative to support a 'person-centred' approach to daily living. If personal
budgets are part of the information given to people as they make life-changing
decisions, then it could make a huge difference to people who either opt to go
into a residential setting or for whom this is the only way in which they can
be adequately supported. People living in their own home in the community and
who need support have a right, following a community care assessment, to be
provided with information on a personal budget. So, irrespective of where a
person lives, a personal budget should be offered. A personal budget enables
people to purchase equipment, services or personal assistance to enable them to
live life in the way they choose.
Personal health budgets are also becoming available
which will enable people to buy an additional range of health and social care
services. Personal health budgets are
being piloted in parts of the country and it is hoped that will soon be
available to all in the same way people access personal budgets.
Ann Macfarlane OBE
Disability
Equality and Independent Living Consultant
