SpeakOut is a national network of more than 100 marginalised and disadvantaged community groups.

Created to support the Care Quality Commission in the discharge of its regulatory functions and managed by the School of Social Work at the University of Central Lancashire, SpeakOut is an example of how the engagement of marginalised and disadvantaged groups can be effectively facilitated.

Its 114 members come from all over the country and include people from: minority faith groups, Black and minority ethnic groups, refugees and asylum seekers, people with a range of physical disabilities, lesbian gay and bisexual people, mental health service users, people with learning disabilities, people with specific dietary needs, older people, young people, Gypsy and Traveller communities, gender specific groups, prisoners, people with HIV, transgender and homeless people.

This has been one of the busiest years SpeakOut has ever had. Since January 1st 2014, SpeakOut groups have supported CQC in the following ways;

Two groups organised focus groups to support the diabetes services review in February 2014:

• Asian Disabled Association (South Asian)

• Leeds Involving People (Mixed Black and minority ethnic)

Five groups supported the review of out of hours GP services in Derby, Suffolk, Kirklees, Manchester and

Cambridgeshire:• Asian Disabled Association

(Homeless people)• Age UK Suffolk (Older people)• Womens Mental Health and Well-

Being Service (Women with a history of mental illness)

• BHA (South Asian)• One Voice for Travellers (Gypsy’s

and Travellers)

Thirty Eight groups have supported Acute, Mental Health and Community Trust Inspections for Leicester, Hull and East Yorkshire, St Georges, Dudley Group, Leeds Teaching Hospitals, East Lancashire, Alderhey,

Brighton and Sussex, North West London, Birmingham and Solihull Mental Health Foundation Trust, Calderstones Partnership, Surrey and Borders, Avon and Wiltshire Partnership, Birmingham Community Healthcare, Cambridgeshire Community Services and Bradford District Care Trust, Lancashire Teaching Hospitals, Mid Yorkshire NHS Trust, North West Ambulance Service, South Central Ambulance Service, Greater Preston CCG GPs, Leicester CCG GPs, Oxford CCG GPs and Sandwell and West Birmingham CCG GP’s:

• Leicester BME elders forum (Older BME people)

• Choices and Rights (Physical and sensory disability)

• Kingston Centre for Independent Living (Physical and sensory disability)

• Mushkil Aasaan (South Asian)• Leeds Involving People (Mental

health service users)• BHA Skyline (HIV positive

refugees and asylum seekers) • Dudley African Caribbean

Befriending Service (African Caribbean)

• Dudley African Carers and Disability Support Group (African).

Update on SpeakOut Activity

Bumper Edition: Autumn 2014SpeakOut Newsletter Compiled by Alia Syed with contributions from Clare Delap, Jane

Golden, Jez Buffin and SpeakOut Network

Update on SpeakOut Activitypage 1

SpeakOut Conference: 10th June 2014page 3

Engage for ChangePage 6

The afternoon round Table Discussions: Complaints and Whistleblowing Page 8

News from around the network 2014 & Other Newspage 9

• The New Testament Welfare Association (African and African Caribbean) .

• Maundy Relief (Mental health service users, substance misusers, homeless people)

• Burnley Pendle and Rossendale CVS (Burnley residents)

• Young Addaction (substance misusers)

• SEEFA (older people)• HASVO (refugees and asylum

seekers)• Brent User Group (mental health

service users)• Mashriq Resource Centre (South

Asian women)• Calderstones Partnership

Involvement Group (Learning disability)

• Surrey Coalition of Disabled People (Learning disability)

• Wiltshire and Swindon Users Network (Mental health service users and learning disability)

• Sakeena Girls Youth Group (South Asian)

• One Voice for Travellers (Gypsy’s and Travellers)

• Sharing Voices (Mental health service users)

• Equity Partnership (Transgender) • Disability Equality NW (Physical

and sensory disability)• Windrush Initiatives (African

Caribbean)• Womens Centre, Kirklees (Mental

health service users)• BHA (Mixed Black and minority

ethnic)• Binoh (Orthodox Jewish)• The Lesbian and Gay Foundation

(Lesbian and Gay)• Awaaz fm (Mixed Black and

minority ethnic)• My Life My Choice (Learning

disability)• BME Elders Forum (Older BME)• West Bromwich African Caribbean

Resource (African Caribbean)• Kumba (Mental health service

users)• OSCAR (Sickle Cell Anaemia and

Thalassaemia)• Cares Sandwell (Carers)• Sandwell Visually Impaired

(Sensory disability)• Sakeena Girls Youth Group (South

Asian) Four groups completed 25 narrative interviews to help define what ‘good’ care looks like in maternity, A&E, surgery and out-patients units:

• West Bromwich African Caribbean Resource Centre (African Caribbean)

• Al Hayat (South Asian)• Asian Disabled Association

(Homeless) • Binoh (Orthodox Jewish)

Seven groups undertook consultations about the proposed changes to regulatory framework and the new rating system:

• Sakeena Youth Group (South Asian)

• SIFA Fireside (Homeless)• Retired Caribbean Nurses (African

Caribbean)• Binoh (Orthodox Jewish)• CARES Sandwell (Carers)• My Life My Choice (Learning

disability)• Pakistani Resource Centre (South

Asian)

In addition, ten groups carried out consultations for Healthwatch England in support of their framework for rights and responsibilities in February 2014:

• Disability Equality NW ((Physical and sensory disability)

• One Voice for Travellers (Gypsy’s and Travellers)

• Calderstones Partnership Involvement Group (Learning

Our experience is that these events are making a real difference. For example, one of the inspectors reported that:

“This was one of the best things I have ever done as an inspector. It really did make me think and has influenced the way I have planned this massive inspection. I had certainly never thought about some of the issues the women raised. You can do all the training in the world but hearing their stories is by far the most powerful. I really hope we do more of these events; there is clearly a need for them.”

And participants are getting a lot out of them too!

“Just to say a big thank you for the meeting on Wednesday! The feedback from our members has been highly positive in regards to how you facilitated the meeting and enabled everyone to have their say. The involvement was great and they really valued having both you and the CQC inspector there to feedback to and quiz, so thank you!”

Every year SpeakOut members get together for an annual conference. This year’s conference, held on June 10th, was hosted by The Sifa Fireside, who are one of SpeakOut’s members. Based in Digbeth, Birmingham, SIFA Fireside is a charity working to tackle homelessness and alcohol misuse. The main gateway to their services is through their daily open access ‘drop

in’ sessions, but people can also self-refer by phone, email or letter and they are happy to take third party referrals. 46 people from twenty four groups attended the event.

The conference was chaired by Jez Buffin, manager of SpeakOut, and speakers included Cath Gilliver (Sifa Fireside) and Kay Sheldon (Board Member of CQC), along with Clare Delap and Jane Golden

from the engagement team of CQC and Elly Jones from Artworks Creative Communities. Alongside formal presentations there were opportunities for interactive round table discussions in both the morning and the afternoon sessions and a facilitated market place event where members could mingle and network. The full agenda is set out in the box below:

SpeakOut Conference: 10th June 2014

SpeakOut conference agenda11.00 Chairs Welcome – Jez Buffin11.05 Welcome from SIFA Fireside Trust – Cath Gilliver, CEO11.10 Opening remarks – Kay Sheldon, Board Member, Care Quality Commission11.20 SpeakOut achievements: a celebration of the last 12 months – Jane Golden, CQC11.30 The new CQC inspection programme – Clare Delap followed by round table discussions12.45 Lunch 1.30 Feedback from morning session1.40 Engage for Change – Elly Thomas, Artworks Creative Communities1.50 Market place and quiz2.15 Parallel sessions (a) Complaints and whistleblowing – Clare Delap (b) Induction: for new groups – Jez Buffin3.15 Feedback, next steps and prizes!3.30 Close

What people are saying about SpeakOut

disability)• Wiltshire and Swindon Users

Network (Mental health service users and learning disability)

• West Bromwich African Caribbean Resource Centre (African Caribbean)

• Sandwell African Caribbean Mental Health Forum (African Caribbean mental health service users)

• Cares Sandwell (Carers)• BHA (Mixed Black and minority

ethnic)• Binoh (Orthodox Jewish)• Asian Disabled Association

(Homeless people)

Representatives from two speakout groups have contributed to the CQC task and finish group on maternity services and representatives from

four groups are members of equality voices. At least four SpeakOut groups have identified individuals who have now become experts by experience.

Through these events, the Care Quality Commission has been able to hear the views and experiences of more than 700 people from a range of hard to reach communities.

The morning round table discussions: The New CQC Inspection Programme – Maximising the Engagement of SpeakOut

Clare Delap began by giving an overview of what the new inspection process looks like.

The Care Quality Commission exists to make that sure health and social care services provide people with safe, effective, compassionate, high-quality care and we encourage care services to improve. The Care Quality Commission monitors, inspects and regulates services to make sure they meet fundamental standards of quality and safety. They publish what they find, including performance ratings to help people

choose care.

When they inspect services, they are looking to see whether they are:

• Safe;• Effective; • Caring;• Responsive to people’s needs;

and• Well-led.

SpeakOut groups have been working with CQC to support local inspections by running community focus groups to with ‘less listened to’ communities to find out about people’s experiences of services being inspected. SpeakOut has conducted 30 community focus groups covering 25 inspections. Inspectors have attended as part of the preparation for their inspections and the focus groups have enabled CQC to reach a wide range of people who they would not normally hear from. As one inspector reported:

‘This is really helpful and we will use the report to inform our key lines of enquiry’

In groups, delegates were asked to reflect on the process of engagement so far and we asked to address the following specific questions.

• If your group ran or took part in a focus group prior to a CQC inspection – what worked well, what could have been better?

• What should CQC do to listen to the voices of hard to reach communities before and during inspections?

• We cannot carry out a community focus group for every harder to reach group for every inspection – how should we target SpeakOut activity?

• What support do SpeakOut groups need to take part?

If your group ran or took part in a focus group prior to a CQC inspection – what worked well, what could have been better?

The present way of working through existing groups and infrastructure was seen as a strength. The current method allowed CQC to have a presence and to be seen to be listening. Going though existing groups and trusted channels allowed people who might otherwise be fearful about complaining to have the confidence to say what they wanted. It was seen to allow a wide range of groups to become involved and to facilitate access to a number of hard to reach communities. It captures lots of opinions that otherwise would not be heard. More such activities should be held. It was seen as a strength that nothing was seen as off

limits – groups and individuals could say what they wanted. The process helped to build confidence.Groups asked for more time to prepare in the lead up to inspections. They wanted to have more time to plan. The planning time should allow for a pre-meeting to discuss what is required and the best ways for engaging.

Groups should be able to plan different ways of engagement – for example, to capture experiences and views 1:1 as well as in discussion groups.

What should CQC do to listen to the voices of hard to reach communities before and during inspections?

• CQC should make effective use of other sources of data, for example linking to PALS. It should actively seek the views of people who are in hospital. It should develop a planning took for CQC inspectors about how to invite groups. It should facilitate and encourage whistle-blowing

The process of an inspection is set out below:

MonitorUsing

information about

services – to find out about risk

PrepareEvents,

Healthwatch focus groups,

data packs

InspectOne to four

days, Specialist

teams including

experts by experience

RateAt service

and location level, for key population

groups

ReportQuality

Summit and written report

four to six weeks after inspection

where appropriate/necessary. CQC needs to have mechanisms for going out to groups/people. You cannot expect people to come to you.

• Web-sites and other information need to be accessibility for people with a visual impairment. Sighted support is needed to enable visually impaired groups

• Some user groups are hard to motivate. You need to be able to show that you are having an impact and that it is worthwhile to work with you and give you information. We are busy and have other priorities. We need to know that it will make a difference.

• You need to make it easier to find out about events. How do we find out?

• You need to allow people to speak on behalf of others (for example, carers and relatives)

• You need to address the culture of blame (in Trusts/managers) so that people can hear and take on board criticism more easily and be more open to it.

• You need to be open to a range of different methods of receiving feedback, for example, focus groups, 1:1 and other flexible ways such as email. You could use technology such as Facebook or Twitter. Use text and SMS.

• Work with organisations that work with these groups. You need to

resource the input of groups when it is time intensive. Use existing groups to reach out.

• Make the questions easy read and simple so that we understand them. Give us plenty of time to plan.

• Reassure people that they will not be penalised for giving their views.

We cannot carry out a community focus group for every harder to reach group for every inspection – how should we target SpeakOut activity?

• Try and target SpeakOut activity around gaps. Concentrate on the groups/issues/areas that are most important. You could make use of community groups to identify this. Focus us where we can have the most impact.

• Use social technology such as Facebook and Twitter as alternative ways of gathering information.

• Join groups together where possible – for example, if there are several SpeakOut groups in one area (Bradford, Dudley, Suffolk).

• What support do SpeakOut groups need to take part?

• Could we establish a regional lead or some regional hubs with half day regional events?

• If we are going to try and capture

people’s everyday experiences – tell us your experiences, we need the skills to do this

• The financial support that we receive is crucial – we need to be able to cover our own time and be able to give rewards/vouchers/incentives. This needs to be done in line with our own local policies however so that we don’t impact on our normal way of doing things. We need to be ale to cover the costs of childcare and travel etc.

• We have to have enough time to plan. We need to be able to integrate the work we do for CQC in our own planning. You need to make planning easy for us – give us materials in simple language that we can understand.

• Help us to advertise events better and give people reasons for why they should attend.

• Give us room to work flexibly. If we want to do some 1:1 work for example for people who don’t like speaking in groups

• Give us training to build on the skills that we have. This should build on the strengths that we have. Training in public speaking. Training in CQC.

• Get more groups involved. Help us to share experiences.

• Give us access to an on-line forum.

Engage for Change

Elly Thomas from Artworks Creative Communities gave delegates an overview of the new on-line, accredited training that is available to SpeakOut members free of charge. You can still register for this. Details are below.

We heard a presentation on the review and its focus and then discussed the issues in small groups.

Health and Social Care services need to improve how they listen to, respond to and learn from the concerns raised by people who use services, their families and members of staff. Professor Mike Richards, Chief Inspector of Hospitals, CQC, has been appointed national ‘complaints champion’. He is leading a review of how well providers of Health and Social Care services use information from complaints. Inspections will look in to how well complaints are handled and CQC are working to improve how they respond to and use what people tell them about their concerns in order to help services improve. The key messages from the round table discussions are set out below.

Knowing how to make a complaint about health and social care services

Most people thought that people in their communities would be unlikely to know how to raise a concern or how to make a complaint about a health or social care service but that this was significantly improved when they were supported either by the service itself or by an advocacy organisation or community group.

It was suggested that some people – people from particular ethnic communities, older people, would be unlikely to raise concerns as they did not want to be seen to be ‘making a fuss’. In some cultures complaining was seen as particularly rude, other communities were likely to be suspicious of all service providers given historical experience.

It was also suggested that people often needed to raise a concern at a time in their lives when they were particularly vulnerable.

Example: X’s family had a very poor experience in a maternity service which ended with a baby dying. The staff noted that something had gone wrong and asked the family if they wanted to pursue it. The family were too traumatised to do this. On reflection X felt that the attitude of the staff should have been: we will pursue it actively, to learn from the situation, rather than leave it up to the family.

It was agreed that there needed to be an open culture from all professionals, one that appears to encourage feedback, good or bad.

People reported that the attitude of professionals often created barriers – “NHS language and processes are often very off-putting for our users”.

What people are likely to raise a concern about

The groups were asked for the biggest issues people in their community were likely to raise as a concern. The biggest issues were:

• Access to services• GP appointments• Waiting times at GP practices and

out patient clinics• Continuity at GP practices – not

seeing the same doctor• Care packages, and being

assessed and then not receiving support

• Attitude of staff and lack of understanding about people with disabilities or people who live in vulnerable circumstances (receptionists demanding proof of address for instance when this was unnecessary)

Example: Y has a visual impairment. The hospital kept sending information about appointments on printed letters. Y responded by complaining to the hospital in braille – as a demonstration of how difficult it was to read in another format. They did not feel that they were listened to.

How well concerns and complaints are dealt with in your area

It was felt by many that complaints and concerns were not taken very seriously. There was also a common problem with the length of time to investigate a concern and a suggestion that services were ‘stringing out’ complaints and concerns.

“After a while people just give up …. It gets complicated and people loose the energy from the original complaint”

Some said that those dealing with complaints in health and social care providers were not those who might deliver the care and so that they would not understand the nature of the concern “just office staff … not frontline”. Also, people are often put off by the ‘jargon’ of the NHS.

Good examples of dealing with complaints

Healthwatch, advocacy organisations and local voluntary organisations had often helped the local communities represented here. One group had had meetings with the Healthwatch and with people from the local hospital about reoccurring issues for their users – this had resulted in direct changes to services.

Several people had examples from advocacy organisations supporting people and ensuring that the complainant got at least an acknowledgement. One group shared an example where their group had complained on behalf of a client to a CCG. This had led to the decommissioning of three services. The response had been particularly good and the complainant kept informed throughout.

The afternoon round Table Discussions: Complaints and Whistleblowing

News from around the network 2014

The National Council For Palliative Care

The National Council For Palliative Care have been carrying out a review of Choice in End of Life Care. Almost half a million people die in England each year and yet many die without having had the opportunity to properly discuss their choices and wishes about how and where they die. The work that they have been doing will help to identify the kind of end of life care that people want and how it might best be offered.

For information about the work Joanna Black ,Community Involvement Manager at : The National Council for Palliative Care, The Fitzpatrick Building, 188-194 York Way, London, N7 9AST: 020 7697 1520E: j.black@ncpc.org.ukW: www.ncpc.org.uk/

Speakup Self Advocacy

Started by Speakup Self Advocacy, the Friendly Information Company is a Social Enterprise run by and for people with disabilities and/or autism, mental health problems, or from vulnerable and disadvantaged groups of all ages. Their aim is to help people and organisation to make

their information accessible to all. Making information accessible helps disabled people to be in control and included, and will help organisation meet their disability access requirements. They have made some fantastic videos about coping with a crisis and mate crime that you can view by clicking on the links above.

How Accessible is NHS Patient Information for you and your Community?

NHS England has begun a consultation on its ‘Accessible Information Standard’. This is designed to improve patient access to information through British Sign Language interpreters, and formats such as ‘easy read’ and Braille. Please click here to read the consultation document and share your views using the online survey, The consultation closes on 9th November 2014. To read more, go to: http://www.england.nhs.uk/2014/08/13/accessible-info-standard/

Making Myself Clear

Mencap’s document ‘Making Myself Clear’ provides some good general guidelines on making language more accessible for people with learning difficulties.

Share your experience of receiving care

Have you or someone you care for received care from a particular care service that you would like to tell the Care Quality Commission about?

If you have experienced poor care, or know that poor care is being provided somewhere you can report it to the

CQC, anonymously if you wish. You can also tell CQC when you feel you or someone you know has received good care.

It’s easy…just follow this link.

Look for the name of the service in the on-line directory using the tabbed search box at the top of the page. Click on the name of the service, and you will see a tab with ‘Please tell us your experience’ on it - this is CQC’s online form for providing feedback on care.

Don’t wait for our newsletter to come out. Keep up to date more regularly by visiting our web-site at

www.speakoutnetwork.org

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