Surrey Coalition AGM 2017

AFTERNOON TABLE DISCUSSIONS

YOUR HOPES FOR THE FUTURE. WHAT HEALTH AND SOCIAL CARE SERVICES COULD DO BETTER

TOGETHER?

1. ARE HEALTH AND SOCIAL CARE SERVICES JOINED UP? OR DO PEOPLE FALL BETWEEN GAPS IN SERVICES?

Things to think and talk about:

1.1 Are patients delayed when ready for discharge from hospital because care is not available at home, or are the right services there when people need them?

Table 1. Facilitator Nathalie Wilson Should have someone who knows about what medication

should be taken and what it’s for Yes, it’s because care is not available Depends on what care is required, you may not have what

you need in your home before you are discharged When discharged into respite care, the social worker didn’t

have a date Lack of appropriate care Transport is an issue → none available and lack of

ambulances There is a lack of knowledge of the person being discharged,

the carer wasn’t there to give reassurance

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Bring back convalesce homes so people have somewhere to go

Waited all day for discharge and when discharged I had penicillin in my bag of meds but I’m allergic to penicillin

Table 2. Facilitator Siobhan Abernethy Yes to the first part of question, and no to the second part. One person talked about no care package being available

last time she left hospital but this was two years ago. This meant she was in hospital ten days longer than necessary. Lack of communication between the hospital, social worker and locality team. Main issue was due to lack of knowledge of a person’s condition (visual impairment). Patronising and unsure what to do because of the condition.

Still a lack of communication between locality teams and Sight for Surrey team.

One person said they did not have a care package for one year and nine months. Lived on their own, no family, didn’t want to rely on friends. Had an assessment and then heard nothing for ages. PA not at all skilled on her condition. Had completely wrong attitude and didn’t show any respect.

Hospitals and social care staff not joined up. There are eyecare liaison officers but emotional and physical

support services are not available. It’s a particular issue in East Surrey.

No

Table 4. Facilitator Jane Ahmed Social workers don’t care or listen – I looked after my 92

year old mother in law for 2 years. Difficult to push the wheelchair so mother in law has to use her own legs.

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Discharge from hospital is very disjointed, delay caused by pharmacy (4-5 hour wait) when you are ready to go. Why can’t it be quicker

Finding it difficult to see the price on food when shopping – can it be bigger

Difficult to open to meat packages / milk, etc. – can ‘feel here’ be coloured

Table 5. Facilitator Jane De La Rosa Yes They don’t work together and no care plan ready People are not listened to Snap judgement, tick box Hospitals don’t communicate with themselves Change of staff and personnel Challenge of care to fit individual Care providers patchy? Community support vs provided service Timely planning of care plans when admitted

Table 6. Facilitator Dan Peacock No to both No support at all when leaving hospital despite being

requested Services not joined up – having to tell your story again. Only

interested in the 1 aspect they are responsible for Staff are miserable – over burdened Big delays → no coordination or information Discharge - pushed between primary care and GP – nobody

took ownership Not looking at the whole family Staff not trained in mental health, trigger points No single point of contact

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The model is right but will never happen (hope):- Funding- Lack of training- Accountability - Fragmented groups- Clinicians but not business managers. Needs to have this

(mental capacity out 1999). Legislation there but not in practice

Nobody knows who owns the project. No accountability

Table 7. Facilitator Carol Rowley No help offered to carer in Cobham following 5-week

hospital admission More help available once hospital admission has happened,

but not as much available beforehand Talk to carers made at each consultation appointment

remember to check how they are coping

Table 8. Facilitator Cathy Kindlimann Services are not there when people need them Hospital discharges held up waiting for care home beds,

home care agency beds Issues around hospital admission with learning disability

patients Lack of communication between services Challenges in getting the services needed leading to

deterioration in hospital

Table 10. Facilitator Ali Jafarey The patient’s personal alarm always immediately meant that

an ambulance was always called. They should be able to contact the carers who could help and prevent hospital

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Discharge is not done properly for patients. Patients are too hastily pressured to leave

Perhaps a discharge coordinator to facilitate a smooth discharge for patients into home

Table 11. Facilitator Kathryn Telford No, not joined up E.g. patients need to be honest about what support is

available to them at home Delay between discharge letters / instructions Should be a follow up after discharge Proper use of care alarm to prevent unnecessary admissions Need for accurate and timely paperwork Can’t always assume patient is giving accurate information RSCH have discharged people in nightwear and at night time Conveyor belt of care Coordinator needed between NHS and social services → to

prepare house, transport, meds

Table 12. Facilitator Sarah Linington (LD table) Positive experience at East Surrey Don’t feel listened to Mixed

- Not joined up- Didn’t interact with different advocate- Needed an advocate to interact and to help communicate

with staff Not looking at the individual No communication equipment Not enough LD liaison nurses Lack of training Hospital departments not working together

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Lack of trained staff to support those with a challenging behaviour

1.2 Do health and social care provide joined up support for people in their homes? (e.g. social workers, care assistants and community nurses)

Table 1. Facilitator Nathalie Wilson Worried about housing related support being taken away,

people will end up in hospital Husband had to wait 3 days to get his pump changed and no

one said they weren’t coming Experience of services knowing there was no one at home

and still discharged me No because there aren’t the people available, the will is there

but not the staff Organisational need to make sure that care

workers/assistants get home on time and know what they have to do

No support there when discharged, only district nurse two weeks later – didn’t work for me

Care coordinators need to be much more on the ball to ensure their staff are doing what they’re meant to do

Ensure that when discharge takes place we have a name and contact number. 24/7 sms! Not one way text

Table 2. Facilitator Siobhan Abernethy No, not really was the consensus. One person said they had

home care help since 2006. One person is supported by Age UK Surrey – no VI training or knowledge of specialist support. The person had to tell them how to support because of their own condition. No quality control. One Age UK

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Surrey care worker had said it was up to the client to notice unhygienic conditions. How could they if they can’t see it! One person has two sons – one has a son with VI and another older son who is autistic. Hasn’t had support for five years. Don’t ask anymore. The GP doesn’t understand the conditions. Wanted to put both into a care home. Believes there’s a lack of professionalism/expertise in the conditions. Thinks it was better previously even in social care teams. Always had different social care workers with variable knowledge. Didn’t feel listened to. Now asking for revised medical assessment to try and start again. Being pushed between GP and social care. One person actually said ‘it’s not me. I can’t help’.

Table 4. Facilitator Jane Ahmed When the mother in law has run out of nappies – I can’t

phone the hospital to ask for more because of my hearing impairment – my husband has to do that

Other people would like an SMS number. Mother in law blue badge ran out 6 months ago – awaiting

GP to sort it out Blue badge renewal very difficult – asking for info they

already have. I have to provide more forms. This is not user friendly for someone with sight difficulties. Disjointed process for getting congestion charge excemption too

Table 5. Facilitator Jane De La Rosa Haphazard – community nurses and GPs Criteria rigid and to avoid problems later on

Table 6. Facilitator Dan Peacock No

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Table 7. Facilitator Carol Rowley Don’t forget education Nobody communicates with each other – not listened to, very

frustrated Wait until something bad happens before doing anything

(experience of mother and husband) Tried to get proactive help – LD too often forgotten –

definitely fall between gaps without diagnosis Cannot access support and services Don’t forget carers No

Table 8. Facilitator Cathy Kindlimann Not yet a joined up approach Living at home is more of a challenge Services need to work together and coordinate visits to

maximise outcomes More joined up services needed. Have impact on wellbeing

of client System very difficult to negotiate Feels things improving but very small steps are taken

Table 10. Facilitator Ali Jafarey As previous question

Table 11. Facilitator Kathryn Telford Someone to coordinate the help needed Need to work together Hospital under pressure to discharge and short staffed Smooth transition needed

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Table 12. Sarah Linington (LD table) Really important to have a named social worker Never knew what time carers were coming in after hospital

stay Found it inconvenient rather than helpful – tried to put to bed

at 5.30 East Surrey feel very isolated

1.3 Do GPs refer patients to social care and other appropriate services when needed?

Table 1. Facilitator Nathalie Wilson Not often enough Don’t know Less and less continuity of GP care, so why would there be

continuity of referring to the community GPs assume that you know what services there are, they

don’t think of referring someone to services One issue is you can’t get to see a GP, all gone by 9 am –

can’t get through Depends on the GP + their knowledge – some very helpful Wait until I really need to see a GP, because it’s so hard to

get an appointment

Table 2. Facilitator Siobhan Abernethy They refer to inappropriate services. They don’t know what

local services are available. They don’t respond to specific requests. There’s an attitude of ‘can’t help as there’s no money’. GPs don’t have time or local knowledge. I asked if we had social workers/VCF in GPs/larger health centres – would that help? Group said that would be so much better.

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Information navigators/ambassadors in GPs is key to improving information and signposting.

Huge culture change. Very challenging. Many GPs have their own speciality and don’t know everything.

Sometimes

Table 4. Facilitator Jane Ahmed Difficult to get GP appointment when mother in law ill. GP

very good but sees lots of other people I’m on the PPG – Patient Participation Group – now I have

insight into how the surgery work I think it is very good. Only problem is getting appointment as no advance booking, only same day. Have to ring at 8 am but I didn’t get up at 8 am

Doctors are protectionist and stop work moving out of the hospital, i.e. eye care should be under optician

Table 5. Facilitator Jane De La Rosa First, the difficulty of getting an appointment Variable, depending on GP practice GPs often limited in accessing information Crisis numbers – no one answering GPs should be more connected Length of time of referrals → cost of acute service

Table 6. Facilitator Dan Peacock No and don’t know who they are Referred once to a specialist since 1947 → polio

Table 7. Facilitator Carol Rowley Nice GP but takes the lead from the family rather than

initiating help

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East Surrey CCG have Health and Wellbeing advisers which help GPs, time too precious

Table 8. Facilitator Cathy Kindlimann Some feel they have good service from their GPs and

referrals are made. Others feel that in the practice it varies and it depends on how well the GP knows you

Younger GP will use technology to look up information but older GPs don’t do this

Table 10. Facilitator Ali Jafarey Not always experience has shown this

Table 11. Facilitator Kathryn Telford Not always Practice managers need to be more accessible / available –

looking after too many surgeries Not trained to deal with mental health issues

1.4 Are people referred on to other services more appropriate for their needs? (e.g. the various services for people with different levels of mental ill health – such as Community Connections, IAPT, Community Mental Health Services etc.)

Table 1. Facilitator Nathalie Wilson Don’t know not many are not but wonder what the waiting

list is like, 18 months waiting list? A couple of years ago In the play, husband should have said his wife may not have

had capacity

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Table 2. Facilitator Siobhan Abernethy Didn’t get to cover this. No

Table 4. Facilitator Jane Ahmed When call GP surgery can’t understand the different choices

offered and husband puts phone on hold often 10-15 minutes therefore get through waste of time – 20 years ago straight through

Kingston hospital – lots of options – advice to go online but I don’t use internet

Table 5. Facilitator Jane De La Rosa People don’t know jargon and acronyms Finding out what is available Referral ok – but waiting list Libraries

Table 6. Facilitator Dan Peacock Not referred

Table 7. Facilitator Carol Rowley MH services and conditions hardest to deal with Not enough help was offered LD services – if no diagnosis from SABP then no help

offered. Cycle of transformations Big problems on the horizon within universal credit/benefits –

people will want to stay stuck – easier than risking new system and getting ‘better’

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Table 8. Facilitator Cathy Kindlimann Agree that people are referred to appropriate services for

their needs Challenges in LD to understand the issues in first instance Clients need someone who knows them to accompany them

to help provide information

Table 10. Facilitator Ali Jafarey People went to CAB for assistance GP did refer to physio GPs may not know of hubs One person has a parent who died of dementia 5 years ago

and had terrible service from GP

Table 11. Facilitator Kathryn Telford Carers prescription has helped refer carers appropriately Some referrals haven’t been successful / appropriate Issues re mental health referrals and support after diagnosis

2. WHAT ARE YOUR HOPES FOR THE FUTURE – HOW CAN HEALTH AND SOCIAL CARE SERVICES BE IMPROVED?

Think and talk about your ideas on: - Information and communication - Attitudes of health and social care professionals - How gaps in services could be filled

Table 1. Facilitator Nathalie Wilson It would be delightful to think Mid Surrey have better

recruitment and retention – revolving staff is difficult for the

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teams and for the residents – more effort needed to resolve that issue

Clarity on the purpose of an appointment, needs more information

Abide by the NHS Accessible Info Standard, ensure services are accessible

A little bit of consistent support now that housing related support has been taken away

Make no assumptions! – should be on display everywhere

Table 2. Facilitator Siobhan Abernethy1) Information and communication Organisations need to comply with the accessible

information standard and people have their preferred formats of communication automatically once they’ve informed the provider/professional. One person who challenged why she received a letter when asked for a phonecall, was told ‘I forgot you had a visual impairment.’

There is no accessible information available for cervical smear tests.

With different providers, not all accessing the same record. Bowel cancer self help kit – completely unsuitable for people

with a visual impairment. One person said they needed more batteries for a hearing

loop. Sent the box off in the post. Didn’t hear anything back. Rang the audiology clinic to follow up. Was told you now need more than a first class stamp to get your replacement batteries How was that communicated?

People with a visual impairment need an email or text when services/requirements change. The whole group is online.

Texts are good or email with telephone call. The date is important to include. NHS won’t do email because of confidentiality.

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People felt there was an arrogance in communication methods, ie we have our ways of doing things and won’t change.

2. Attitude of health and social care professionals Much more training is required. Disability awareness training

is key. One person is involved in the Runnymede Access Group and 15 GP practices in that area. One senior, older GP was set in ways. Certain things he wouldn’t do. Wouldn’t liaise with Ashford and St Peters.

Need pictograms on IT systems to highlight the different impairments.

Bring health and social care professionals to local DANs and Surrey Coalition AGM.

Need better social interaction. Both health and social care staff at fault. Health and social care don’t listen. And no joined up thinking

3. How gaps in services could be filled. Ask local people. Employ people with disabilities as experts/ambassadors.

Table 4. Facilitator Jane Ahmed Get rid of CCGs and combine them into STPs. STP has

made good progress on eye care schemes Car parking at Ashley Centre charges a lot if you even go

one minute over the hour – want car parking to be cheaper Traffic warden comes in the evening and should not work in

the evening, when she visits the mother in law in hospital in the evening

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Table 5. Facilitator Jane De La Rosa Opportunities to ask questions Follow up Attitudes generally good despite constraints

Table 6. Facilitator Dan Peacock Treated like any other person Respect and dignity Make sure at all times for those with a learning disability Make sure they understand the disabled

Table 7. Facilitator Carol Rowley SMS and easy read. Need record keeping. Different IT

systems do not help Feels as though people are passed around the system until

something serious happens Check your records = shared record Keeping ok but do services even look at their own properly Would be helpful if it was easier to view own records SMS, easy read, should be easily available

Table 8. Facilitator Cathy Kindlimann Being able to see online records. A client page and able to

make comments Shared records and shared services (e.g. ambulance aware

of medication and diagnosis) Records should be available, shouldn’t have to repeat

information all the time Carers scared to ask for reviews in case the care is cut for

service user More pharmacists in the community getting to know clients.

They need them more of them and listen to people

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LD nurses make a big difference Feels like it’s just a job to professionals, don’t see the

individuals Need to work together to stop delays in services Some are very good, no consistency and familiarity, don’t

see the same person, can’t build that relationship

Table 10. Facilitator Ali Jafarey Information can be shared with stakeholder committee

meeting Professionals should listen more to patients They can assess patient and carer separately Better training and people skills Want more money spent on service

Table 11. Facilitator Kathryn Telford Still a stigma around mental health Include stakeholders in decision and sharing information Effective management team Include carers in info and advice Transparent and accountable and responsible More time to assess / diagnose Listening properly to patients Conversation / assessment needs to be appropriately done Separate carers assessment if needed – look at the whole

family Appropriately trained staff

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3. WHAT DIFFERENCE WOULD HEALTH AND SOCIAL CARE INTEGRATION MAKE FOR YOU?

Please add any other comments you want to make

Table 1. Facilitator Nathalie Wilson A joined up service Feels like a fantasy, it’s been muted about for so long but so

patchy, depending on the area Teams still don’t talk, different locations, for healthcare

outside of Surrey Patient needs to be in charge of own record and take that to

the medic – info has to be uploaded automatically and available

Table 2. Facilitator Siobhan Abernethy It would be:

Less stressfulLess time consumingWould only tell story onceSave everybody money.

One person said they have over 50 years’ worth of patient notes mainly hand written – no use to him.

Should ask people with VI what help they need. Whole public sector needs to work with disabled people on

whole range of areas from planning, transport and health. Someone suggested mini awareness session at next AGM

for professionals. I just wish that professionals would do their jobs with less

impact on clients Attitudes do need to change sooner rather than later A better service for all

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Table 4. Facilitator Jane Ahmed Should have more use of A1 – had 2 cataract operations by

machine and they worked very well. More use of machines for diagnosis and operations

Table 5. Facilitator Jane De La Rosa Feeling communicated with and involved If it worked, it would be beautiful to the individual and save

money

Table 6. Facilitator Dan Peacock David Muir – can’t even get an advocate to explain his story Losing confidentiality by passing on information Find out who can fill the gaps

Table 7. Facilitator Carol Rowley Remember education, DWP, etc. Easier for professionals to take responsibility when all

together in the room – feel more supported and less worried about overstepping boundaries

Life as a carer would be a lot easier – make sure everyone understands about confidentiality and how they can talk to carers

Ensure that those who are seen as having LD by social care, don’t lose anything when the merging of H+CS – so they can have health checks

Ensure that people’s communication needs are fully met by both

Don’t forget carers

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Table 8. Facilitator Cathy Kindlimann Bound to be better Better communication if integrated Sharing budgets is the way forward

Table 10. Facilitator Ali Jafarey Services should be more honest, open and transparent Single Point of Access sounds good GP appointment should take people in the middle of the day

too

Table 11. Facilitator Kathryn Telford Steer needs to come from the top down Too many changes Don’t want to tell story over again and again – hopefully

integration will help this GPs need to have more availability of appointments

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