Summary of Findings from Patient and Carer Involvement Activities for the Learning Disability

Summary of findings from patient and carer involvement activities for the Learning Disability Service Development Initiative (SDI)

1. Introduction
   A programme of involvement activities and review of feedback has been carried out to inform the SDI and this paper gives a summary of the main themes. This information now needs to be considered as part of the project planning.

1. What activities have taken place
   

Two Listening Events were carried out in the County with a mix of people who use our services and carers. Due to difficulties with transport and accessible venues a decision was made to adapt the tools used in these events and carry out listening activities with individuals rather than run the third event in the City.

The feedback from these events have been analysed and can be found in Appendix 1.

Evidence from previous consultations with LD Service Users and Carers has been pulled together.

Direct consultation with people with a learning disability will only reach a limited number of people due to the complexity of communication for people with learning disabilities.

Information has therefore been collected and collated from a range of activities, these were:-

• The findings from the Friends and Family Test, Appendix 2
• Complaints and compliments received, Appendix 3
• Triangle of Care Audits, Appendix 4
• Patient and Carer Stories
• Information from national investigations, consultations and policy, Appendix 5

1. Findings

An analysis of all the data gained highlighted some clear priority areas for the Service to achieve or to continue with in future service delivery:-

a) Getting the right staff and ensuring their on-going competence. The important qualities of staff are clearly defined by people who use our services and have been consistent over many engagement activities.

This area was highlighted in Listening Events, Friends and Family Test, complaints and compliments and Winterbourne View.

“Testing for staff that are coming….. have they got the right attitude?”

b) The quality of communication, interactions, involvement and information. This covers a wide area including communication with people with learning disabilities, carers and other Health and Social Care staff.

Listening to and respecting the views of people with learning disabilities is seen as the most important area.

“Number one point is listening, people need to listen to us”

Ensuring people can be involved in decisions, express their views and consent to treatment were also thought to be very important.

Winterbourne View and the CIPOLD report also raise these issues and the importance of applying the Mental Capacity Act.

People also said they needed good information presented in a way they could understand and it is important to involve and listen to carers.

“They (services) don’t recognise the experience of carers who care for the person 24/7”

Transforming Care also recommends the use of the Royal College of Speech and Language Therapists, Five Good Communication Standards. These would need contextualising for community services as they are designed for residential services.

There were also issues raised about really understanding people and their needs. As well as good communication skills this would also involve staff having good psychological skills and the use of Positive Behaviour Support.

“Somebody who understands me and knows my routine”

c) The qualities of service that were reported to be important were focussed on:-

• Easy access and availability
• Person centred, flexible enough to meet individual needs
• Welcoming and familiar to help reduce anxiety
• Reliable and clear what is happening

These points were raised as part of the Listening Events and reinforced through comments in complaints, compliments and the Family and Friends Test.

CIPOLD also recommends services adapt in a proactive way to prevent people going into crisis

“Seeing doctor at Day Centre was easy for me to get to”.

“Quick response to initial referral”

d) Additional information from national and local investigations and policies have highlighted the following areas:-

• Need to improve access to all services and provide a co-ordinated approach to reduce preventable illness and death (CIPOLD)
• Reduction of admission to acute hospitals, shorter stays and safer discharge (CIPOLD and NHS Outcome Measures)
• Reduced admissions and shorter stays in Assessment and Treatment Units (Winterbourne /Transferring Care)
• Improved partnership working and integration of services (Better Care Together).

1. Next Steps
   

The Project Group to receive and agree this report and discuss how this will influence the overall project

Appendix 1

Listening Event Feedback

1. What makes a perfect Learning Disability Professional?

There are qualities that people with learning disabilities consistently tell us are important in staff. The types of response were: Friendly, Happy, Honest, Considerate, Patient, Supportive, Approachable, Caring, Straight Forward, Polite, Fun, Very Kind, Respectful, Helpful, Nice.

The second point that always receives a lot of comments is the communication skills of staff. The first area is good communication with people with learning disabilities. This included listening to people and valuing their opinions. Staff need to be able to explain things clearly, using the best ways to support an individual’s understanding.

Information should be provided in a way that people understand.

People want to be given time to talk and opportunities to make choices and have control.

Secondly, people wanted staff to really understand their needs and approaches and routines that would support them to understand, be involved and feel safe.

The third area of communication was that services were talking to each other so that people received integrated services.

The third area that people wanted in relation to staff was that they were good at their job. This was expressed in several ways.

Staff need to be very knowledgeable in relation to learning disabilities and experts in what they are doing. Staff should be confident and they need to be there to help people.

There were several comments about action in relation to sorting things out, organising things and sorting problems. Staff should also support people to have informed choices and have the means and opportunities to communicate concerns. They should look at the whole picture not just one aspect and they should speak up for people with learning disabilities and what they want.

1. Defining what makes a good experience of a Service.

There were many comments on the availability of services; people wanted the service to always be available and to be able to phone when they needed help. They want easy access to the service and appreciated the ability to refer themselves.

They wanted a quick response and not to have to wait when coming for an appointment.

Reliability was also important, staff doing what they say they will, coming on time and knowing when someone is coming.

People also value and feel more secure if they see the same people, familiar faces and voices. They need places that are easy to get to or to be visited at home. Careful consideration is needed to the need for quiet areas to wait and a welcoming approach, which helps people to feel safe and understand what is going to happen.

A significant amount of responses relate to being understood, empathy and having the chance to express their views and make choices.

Their bad experiences often relate to being made to feel anxious, or rushed due to staff behaviours or the environment.

Some people wanted a greater range of staff, more men, or colours and creeds.

Outcomes are often expressed in terms of confidence and better information.

Carers felt they had a valuable role and understood the needs of the individual. This information needs to be used more and blended with the expertise of staff.

Appendix 2

Summary of Learning Disability

Friends and Family Test

February 2014 to September 2014

Community

Average 100%

Short Breaks

Average score 100%

Agnes Unit

No returns during this period, forms were given to people during the discharge process but not completed

All returns during this period were extremely likely or likely to recommend the service.

The themes that were highlighted in the feedback were, therefore on the whole very positive and will help the service understand the important elements for people who use our service and their carers. These elements are the ones that would need to be retained and built on as part of the service development initiative.

Themes from the comments for the community services

1. People comment on their experience of the service and how it makes them feel.

This has helped me to feel happy

[Name] feels happy there

I feel I could contact the team at a later date with any further problems.

We feel very happy with the care and support we all receive we could not ask for more

Loved spending time with [Name].

Very happy, feel happy

I enjoyed taking part in the services

I'm happy with that, to know that I am healthy.

2. Reliable and timely services available that have confidence and trust in

The swiftness of getting the equipment was to her credit.

[Name's] problems were solved in a swift and efficient way

Consistent level of care that we have great confidence in

However, we have to be able to trust that the same high standards will continue and that the care and homely atmosphere is there. Despite reductions in funding.

It has been a good service because they make you feel at ease and they look after you well when you are there.

The family were put at ease.

Quick response to initial referral and to my queries on follow up visit letter

3. Quality of interactions, communication and information

Clear information
Good relationship

Every care has been taken with our daughter during this process

You have taken the time to listen and with both [Name] and myself

Written material in easy read was very helpful

Calling card and appointment card system very helpful.

Having contact with a professional from the team. Not just someone at the end of the phone

All questions answered

Just at the end of the phone. Priceless!

Super helpful physio who is easy to talk to and quickly got to know my daughter and her needs.

4. Staff Attributes

The professionalism and understanding of the OT has been outstanding, she makes one feel at ease, she has a great empathy for ones needs and problems

[Name's] a nice lady, she's always nice to me. I like [Name]

[Name] was lovely.

They are kind and talk to me

5. Friendly, Helpful and Supportive

(staff name) was very helpful and sorted out lots of things for (name)

Physiotherapist very friendly and helpful

Was very helpful and sympathetic

The support given has been very good.

Excellent, [Name] was so helpful and was a massive support

Helped

(Name) was very helpful.

6. Describing Outcomes

I feel happy with the result of visits. I now have a walking frame which helps a lot with my mobility

It identified what the problem is and not being as bad as expected.

It is good to talk about my feelings

Stopped me being in pain, helped me sleep

has made a huge difference (to both person and carer)

This training was very informative and broadened my knowledge and understanding of Dementia.

7. Other Comments

Because we have no complaints at all

Don't know how we would be able to carry on without this service

There were a couple of less positive comment:

It seems okay. Unable to get services if there is emergency in the family. Some of the staff not good if the information asked by telephone. Little problems are made big.

Lady wrote report and that is all.

Themes from the comments on short break services

1. The importance of the short break service for carers
I do not get a rest without short breaks, having a break is important, regular breaks, flexible, stress free break

Knowing she gets good care gives us a stress free break

No worries sending person there, well looked after

We as parents value our respite breaks.

In the emergency they are always there for the parents

Your staff gave us confidence to leave [Name] knowing he will be very well cared for and all his needs met

If [Name] is happy it gives us peace of mind and we can enjoy the break ourselves Very helpful and accommodating when I become unwell

The respite stay helps me to take a break from the daily cares and this helps me feel refreshed when [Name] arrives home

2. The individual’s enjoyment of the break, person centred service

Looks forward to break, very happy to go

The home is suitable for person, lovely place, home from home, happy place, safe and can trust staff familiar to moods and needs

[Name] seems to be very happy she just goes straight in and gets herself settled.

[Name] is always happy and content with his stay

[Name] enjoys his stays at Rubicon

He's very happy.

3. Quality of the staff

Staff are excellent with him, I can rely on them, staff are friendly and caring

Staff go above and beyond the call of duty, staff we know and trust

The staff are brilliant

It is a lovely place and the staff are wonderful. The staff are very good and helpful, kind and very caring.

4. Other comments

Keep up the good work.

Rubicon is brilliant

Everything I would wish for

Following a complaint meeting with [Name] manager on 19/06/14 regarding our respite services. I confirm that the service we received has improved, but as [Name] said this needs to be maintained. Keep up the good work.

PS not sure about the new uniforms.

A very good service, thank you

Jane Parr

10/11/14

Summary of Learning Disability

Friends and Family Test

October 2013 – January 2014

Number of returns and score

Community

Average NPS score 88%

Range 94.12% to 73.68%

Themes from the comments for the community

1. People comment on their experience of the service and how it makes them feel.

Most people said they were happy and enjoyed the sessions with our services. People also said they looked forward to the sessions.

2. Reliable and timely services available

People liked having a prompt response when they needed help and there were several comments about the importance of the service being there.

“When I need help you are there”

“Brilliant to know someone at the end of a phone”

People used words like available, being on time, problems dealt with quickly.

Importance was placed on people doing what they said they would do, regular contact and speed of service.

Concerns were also raised in relation to staff not calling back when they said they would, appointments being cancelled and services not being available anymore.

3. Quality of interactions, communication and information

There were a lot of comments about this area. People valued the fact that staff are easy to approach and you can tell them anything. They put you at ease.

Many responses mentioned the importance of staff taking the time to get to know the person and really listening to them. Staff also took time to explain things in a way that could be understood. People felt they had been listened to and that and that their concerns were understood. Good information and advice was also appreciated.

4. Staff Attributes

The following were the most commonly mentioned

Kind, respectful, knowledgeable, pleasant, friendly, nice, polite, competent, calm, professional

5. Helpful and Supportive

As with all previous feedback the most commonly used words are helpful and supportive.

6. Describing Outcomes

People usually gave broad descriptions of the outcomes achieved such as:

Improved quality of life, feeling more confident, positive outcome, taught me a lot, good advice, achieved more than thought she could, makes me better.

A few people mentioned more specific things such as reduced panic attacks, lost weight, explained how to keep safe, helped with my drinking, helped me understand relationships.

7. Other Concerns

There were 2 comments about food and one about the relevance and length of the core information.

There were also some concerns about information on discharge and how any progress could be maintained.