100 Voices for Family Carers

Here is how people answered the questions

where they could write their answer.

What one thing could help you the most in your

caring role?

Here are the things that a number of people all said:

10 people said more support or the right support
7 people said more information, or more info about benefits or
work opportunities
7 people said respite care or more respite care would help
6 people said confidence in current support or services
continuing
6 people were happy with their support or care and wanted it to
continue
5 people said nothing or no one things would help
4 people said no more cuts, fear of cuts or closing services
3 people said being listened to would help
3 people said continuity of care
3 people were unsure or didnt know what would help
3 people said more time off or more breaks

Here are the other answers people gave:

A pack that tells us what is available where and how to access it
in the area
A partner to help at home
A support group of like minded parents
A support network during the day
A weekly PA
Been able to give support
Better amenities for people with profound Learning Disabilities
Better communication with he care organisation and more
knowledge about personal health and social care budgets
Better co-ordinated support when problems/issues occur
Bigger house
Consistent care
Co-production sharing from the Local Authority
Having someone available when necessary/ needed to help or
talk to
Having the right plan in place confidence in local social services
support
Having the right services in place for both service users and
carers
Help from family
I am not a carer at home - senior care and support
If our son could be persuaded to have a short holiday away from
us - 3 or 4 days
Improved access to Grindon mews - longer hours etc
Know that options are available for appropriate housing when
parents 'pass away'
Leaving us to get on with it not filling in forms by people who

don't know our family.

LESS RED TAPE
Local government keeping control of own budgets
Mobility
More feed back from the day centre
More funding
More hydrotherapy as local provision is being reduced
More interaction from care managers
More 'joined up' care/services with a single contact
More understanding everywhere on Autism
official support - form person who knows you rather than having
to go through background info every time
peace of mind of what the future holds for my Son when I am
gone
Recognition and communication with support agencies
Secure facilities with caring staff
Social outlet there aren't any
Some support from transitions
Spending my sons budget creatively not being limited to pay
hours
Stable day service
Staying on my best behaviour, people learning to be the best
they can be.
Possible befriender for Young Person
The most important thing is that the person who is cared for has
the right support to enable him or her to experience the best
quality of life possible, to work together with family members
during good times and bad
Time for myself or help with appointments (shorter waiting times

or assistance from another person)

To be able to be in touch with one person who could point us in
the right direction if we have problems
To be able to get services I require for my son. In the past its
been hard to get the right help.
To be considered as a carer alongside the person I care for's
needs.
To have the continuing day care what she gets now
We are not Gillian's carers, but we are very happy with the
current arrangements.

What change in support/services would make the biggest

improvement to your life?

Here are the things a number of people said:

12 people said no changes

10 people said more staffing or support
8 people said more respite
3 people said more money in services
5 people said no more cuts to services or support
3 people said nothing or that they didnt know
2 people said more communication or contact

Here are the other answers people gave:

more carer support *easier access to services *more joined up'
services * more social groups based around services e.g speech
and language
1) Transport to and from home 2) Longer hours 2.30pm finish a bit
short, 3.30-4pm finish would be better
As above. The better the service/amenities the more comfortable
life for carers, improvement all round
As long as our support stays as it is we'll be ok. Things are good
at the moment meaning son is happy and that makes me happy
Being able to contact social workers easier, would benefit having

named social worker

Being informed of any new services
Being more creative
Better quality care agency support
Better training and more funding
Better transport arrangements for service users - more flexible
hours at day centre
Care during college holidays
Carers recognition
Change in services to include more involvement going out into the
community
Commitment to continuity of care
Confidence in the available support that it is there
Decent and safe care, not privatised
Direct payments have been a huge help with employing
staff/carers for my son. Support services have improved over the
years ie speech therapy.
Don't get any help at all
Flexibility
Good caring social workers
Housing
I am happy just to have what I get now at Grindon Mews it is ideal
and meets my daughters needs
Improvement in appliance services and how they are delivered
Keeping and perhaps increasing greatly needed physio in all
aspects e.g. Hydro
Keeping the same staff supporting my son
Knowing what support is available for parent and young person

 Knowing what will be available when I cannot take care of my son

Listening to what I say not doing what they think
Mobility
More access to leisure activities have a purposeful life
More access to work opportunities - voluntary etc
More choice; less hurdles to manage.
More flexibilty
More good, reliable, trained support and someone available for
information - contact name
More information about available services
More support to get patient out as he cant cope with large crowds
More time and variety
None really though any reduction in support/services would make
life more difficult
North East regional to look after our disabled people more
Not having to fight the system for what my son needed
Nothing it's a privilege to care for my daughter
Once the people I care for are settled on a new environment
People listen to carers
People to stick to what they say, flexibility in day services for those
who have autism. Less noisy environments
Residential care
Social care staff being paid a living wage
Stability and assurance that changes do not impact on current
level of services provide/to meet individual needs
Savings could be made by reducing fat cat salaries, expenses and
perks such as subsidised cars and bottled water!
The support/services I receive at this present time more than suits
my needs as a carer.

 To be given as a carer more information by local authorities what

is going on in the area
To be given support options as a carer in my individual right.
To stop having to have constant assessments and reassessments
to be seen as an individual not a number
Trained carers to deal with all mentally disabled people and
genuine caring carers
TRANSPORT AND THINGS ON A WEEKEND
Understanding our needs and stuff.
We feel we have been well supported over the years with the
several challenges we have faced as carers. However, I feel that
carers always need to be 'vigilant' to make sure the needs of the
person they care for are met and that all agencies involved are not
complacent.
Working with agencies to support son rather than getting his
version of what help he is getting