East Sussex Carers’ Forum Your Health Service is changing. What do you think? 13th September 2012
Topic
Your health service is changing, what do you think?
Venue
Robertsbridge Village Hall
Chair of Carers Forum
Roger Strange-Burlong
Speakers Andy Porter - Deputy Director Social Inclusion, Sussex Partnership NHS Trust (SPFT) Laura Rickaby - Health Services Liaison Co-ordinator, Care for the Carers Stuart Welling - Chairman, East Sussex Healthcare NHS Trust (ESHT) Jayne Black - Deputy Director of Strategic Development, ESHT Catherine Ashton - Programme Director, Sussex Together/ESHT Consultation Sara Geater - Engagement & Equality Strategy Lead NHS Sussex
Contents Page 3
Introduction
Page 4
Triangle of Care
Page 5
Carers Charter
Page 6
How helpful is your GP to you as a Carer?
Page 8
Are your opinions, as a carer, taken into consideration by Health Professionals?
Page 10
General Questions
Page 11
Improving Health & Wellbeing in East Sussex
Page 11
What is your biggest concern regarding your physical health and mental wellbeing and/or those you care for?
Page 12
What single thing would make the biggest difference in addressing that concern?
Page 14
Presentation and discussion about the proposed changes to Hospital Services by ESHT
Page 18
Evaluation of the Forum
Appendix 1 ESHT Report from afternoon of forum Thank you Thank you to everyone who helped at the Forum – our colleagues at ESHT, Health & Wellbeing Board (ESCC), Improving Carers Experience Project (ICE), East Sussex Local Involvement Network (LINk), NHS Sussex, our staff and volunteers who helped organise the day, and of course everyone who came along and took part.
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Introduction Roger Strange-Burlong, Chair, opened the meeting by welcoming everyone to the Forum and reminding people of the last forum in June 2012. The theme was ‘Inform, Communicate and Educate’ and over 240 comments and questions were collected. 98% of carers found the event good, very good or excellent, and the majority ended the morning feeling informed and listened to. The last Forum was followed by a successful summer event on one of the rare dry days in June! It was a good opportunity for carers to catch up with each other to learn about services available and to raise awareness of carers’ issues; just over £150 was raised for Care for the Carers. This Forum focussed on health and looked at the proposed change s to hospital services. Debbie Harris, Involvement Officer at Care for the Carers, explained that Jennifer Twist, CEO of Carer for the Carers, could not attend the forum as she was speaking to the Health Overview & Scrutiny Committee at County Hall about forthcoming changes to NHS Services. The Committee is particularly interested in carers experiences with our local hospitals and the impact of the proposed hospital changes – we heard more about this in the afternoon, and the points raised will be included in Care for the Carers’ formal response to the consultation. Included in this report are a selection of the comments made on the day, it has not been practical to include every comment in this report but every comment is recorded, read and taken into account when submitting carers views to consultations and meetings. In all of the table discussions many of the comments centred around communication and what a difference good communication can make. This can be between: health professionals, health & social care, and professionals & carers. This is a recurring theme at forums and is something that we do emphasise to all those who have contact with carers. It was also very clear that what is acceptable as standard practice to some, is not acceptable to others. A good example of this is the ‘ring back’ service run by some GP surgeries. If you ring for an appointment and an appointment isn’t immediately available, some surgeries arrange for a Doctor or Nurse to call back and assess the situation in a phone call. Many carers find this a helpful service but others stated that this was not convenient and should be discontinued.
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Triangle of Care (Andy Porter Deputy Director Social Inclusion, Sussex Partnership NHS Trust (SPFT))
Andy explained that his team provide a range of services within East Sussex with no upper age limit for adults with mental health needs, both in hospital care and community care. Services are also provided for substance misuse, alcohol and learning disability. ‘Health in Mind’ services provided by the Trust are primary care mental health services for mild depression or anxiety. Andy explained briefly about the carers charter at SPFT – the Trust is prioritising carers as part of its policy and strategy and is developing internal and external mechanisms to identify carers. Most notably the Trust has signed up to the ‘Triangle of Care’, a guide to developing an organisation’s awareness of carers’ needs, and has published a Carer’s Charter.
The Triangle of Care is a guide jointly published by the Princess Royal Trust for Carers (Now Carers Trust) and National Mental Health Development Unit emphasizing the need for better local strategic involvement of carers and families in the care planning and treatment of people with mental ill health.
The Triangle of Care approach was developed by carers and staff to improve carer engagement in acute inpatient and home treatment services. The guide outlines key elements to achieving this as well as examples of good practice. It recommends better partnership working between service users, their carers and organisations. More details about the Triangle of Care can be seen by visiting the link below: http://professionals.carers.org/health/articles/triangle-of-care,6802,PR.html
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Carers Charter (Laura Rickaby Health Services Liaison Co-ordinator, Care for the Carers) Laura spoke about her work with GP practices in East Sussex to improve services for carers. She explained that Care for the Carers has developed the GP Carers Charter and that she is working with 33 surgeries towards their charter. She also wanted to know carers’ comments and experiences about how their GP surgery works; carers were invited to complete a short questionnaire. If you would like to share your experiences with Laura please contact the office. The main points about the GP Carers Charter are: 5 Guiding Principles, each one focuses on a particular area of practice. Within each Guiding Principle there are a set of quality standards to work towards. Clear information is provided about how health services should be supporting carers. Guiding Principle 1 Team members are supported to develop and maintain their knowledge, skills and experience to ensure the practice identifies and supports carers. Guiding Principle 2 Recognising carers as partners in care, and ensuring that they have access to the services they need to support them in their caring role. Guiding Principle 3 Helping carers have a life of their own alongside their caring role. Guiding Principle 4 Ensuring that carers stay mentally and physically well and are treated with dignity Guiding Principle 5 Children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive Assessment •
GP Practices assess their current performance using self-assessment section.
•
GP Practices can access information, advice and support to improve their practice and ensure that they are meeting the needs of carers.
•
They are assessed by the Health Services Liaison Co-ordinator and Carer Assessors and receive a star rating based on their performance.
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How helpful is your GP to you as a Carer? (Table Discussion) There were 86 comments recorded during the table discussions – these ranged from high praise of GPs and their surgeries to complaints about lack of support and understanding. A selection of these comments is below. Communication between professionals, as well as professionals and carers, was highlighted as a major issue for carers. Poor communication is a recurring theme in discussions with carers who want to be treated as a partner in the care of the person they care for.
Carers who have registered as a carer with their GP wanted other carers to know how important it is for their GP to know they are a carer and the additional help and advice that may then be available.
Communication •
“Communication lost between GP and support staff e.g. district nurses and health visitors”
•
“Communication between surgery and hospital poor – I had to chase things up in an emergency situation”
•
“Because as a carer I am under a different GP practice to the person I care for there is no liaison between the two practices”
•
“If social care system worked in better partnership with health things would be better”
•
“Important to be able to speak to receptionists confidentially”
•
“No continuity, too much red tape, district nurses etc. disagreeing over their responsibilities – follow up care”
Importance of carers being involved as equal partners •
“Health professionals rarely involve the children and young people in care plan discussions, but who helps put the care in place?”
•
“GPs need to look after carers, carers’ time is limited, caring is tiring and carers do not have much time for themselves. Having understanding and support is vital”
•
“Confidentiality is a barrier to enabling carers to support the cared for. A simple question to the cared for could resolve this (for carers of all ages)”
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Importance of being identified as a carer •
“Carers need to know it’s good to tell your GP practice you are a carer. Lots of benefits: offered flu jab annually, priority appointments”
•
“You don’t have to be ill to visit your GP; there are other benefits to being known as a carer. Also register your loved one who has an illness or disability”
•
“Carers need a confidence boost to speak up for themselves”
Examples of good practice •
“Very good, does home visits caring (lady)”
•
“I find my GP is supportive and offers flexible appointments. Will listen to my concerns but is sometimes unable to offer solutions”
•
“‘What is worrying you most about this?’ – a good thing that GPs ask patients”
•
“GP very supportive for service user and carer – arranged for the community nurse to visit the service user at own home”
•
“Very, very, helpful, signposted to Care for the Carers”
•
“GP giving carer positive recognition for all her good work ‘you need a medal’”
•
“Carers Charter is great”
Examples of Poor Practice •
“GP seems reluctant to make home visits”
•
“Out of hours – impersonal, they usually won’t come out and visit”
•
“Strange in this day and age that (surgeries) close for an hour at lunch time”
•
“Surgery too big – depersonalised, feels like a business generated for/by profit”
•
“Too much expectation of carers having to ask for help rather than being offered”
•
“Treating symptoms and not the case, not addressing the cause, lack of preventative support/treatment”
•
“GPs rarely ask the parent who helps them at home”
General Observations •
“Reception and staff are under pressure – this reflects on how they support you”
•
“Surgeries need a cohesive approach to supporting carers”
•
“Some better than others”
•
“If one surgery can be so good – why can’t all of them?”
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•
“Makes all the difference if you have a good GP”
•
“GP practices – a place for carers to be identified – they very rarely mention Care for Carers”
Are your opinions, as a carer, taken into consideration by Health Professionals? (Table Discussion) The majority of carers at the forum felt that their views and opinions are not taken into account by professionals but those who did feel listened to also felt empowered by this positive experience.
Generally carers felt that they have had to become more forceful when dealing with professionals to ensure that the best care is received by the person they care for.
Examples of good practice •
“Yes, the GP does listen to me”
•
“Good working relationships are vital and important for things to happen and work well. Experience is everything, listening and acting is also crucial”
•
“Being involved in planning is wonderful. Carer’s opinions on what works is a positive step forward. It is empowering being valued as a carer in this way”
Examples of bad practice •
“Consultants can be patronising and rude”
•
“Carer expected to take patient to GP practice – no recognition that they may be working/have other responsibilities”
•
“Professionals can be closed minded – don’t want to stray away from their way of doing things”
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“My opinions as a carer are felt to be secondary”
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“Across the board – no”
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“Health professionals do not appear to have time to take on board the opinions of carers”
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“My opinion as a carer is not taken into consideration at all by health professionals – they treat me like an interfering relative”
•
“Made suggestions – not taken on board – give priority to cared person rather than carer”
•
“Carers are not always involved in care plans, treatment etc. carer should be consulted and included, not excluded”
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•
“Observations by carer to health professionals are sometimes dismissed without consideration of how well the carer knows the person they are looking after”
•
“Lack of understanding. Carers understand the person they are caring for. Listen to them!”
•
“Professionals need to value the input that carers can give i.e. dentists seem to really value carers advice/input”
•
“Have to ‘push’ for help and support, push to have your opinion heard”
General Observations •
“It’s very hard to train people in common sense or courtesy”
•
“Unhelpful staff. Staff need training to understand the needs of carers and cared for”
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“Health visitors need to be educated about parent carers – not all carers are older people”
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“They appear to be taking my opinions into consideration but whether they are or not is another matter”
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“Confidentiality clause is often a red herring – used as an excuse not to communicate with carer”
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“When your opinion differs from what is being suggested, not well, received, they are the ‘professionals’. Even when they listen to your opinions, they can’t implement what is required”
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“Some health professionals see carers as an obstacle rather than an asset”
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“I question if I’m viewed by my GP as a ‘nagger’, busy body, over-protective”
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“As a carer I have had to become forceful. Some professionals want to get rid of ‘difficult’ carers”
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“The amounts of knowledge people have is enormous and it isn’t listened to at times”
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“My caring role is quite obvious but what about the carers whose role isn’t so apparent”
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“Best practice not standard throughout system. Why not?”
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Following the lunch break members of East Sussex Local Involvement Network (LINk) joined the forum to take part in the discussions about the proposed changes to hospital services.
General Questions to the chair of the forum Q:
At the January 2012 Forum Keith Hinkley promised that more money would be made available for respite for carers. Is there any update to this?
A:
Response from Tamsin Peart, Strategic Commissioning Manager (Carers), Adult Social Care, East Sussex County Council: There will be new money coming to support carers in East Sussex – funding was agreed between the Primary Care Trust (PCT) and East Sussex County Council - at the beginning of this week. Further discussions will take place about expenditure for next 2 years, and how the extra money will be allocated. There is a commitment from the PCT for additional money for this year. Tamsin confirmed that the Financial Year is April to March. The Forum asked that Roger send a letter to the relevant person asking for clarification about the extra money.
Q:
Is Laura in contact with both Health Centres in Seaford?
A:
Laura confirmed she is in contact and will speak with carers who asked this question.
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Improving health and wellbeing in East Sussex Lisa Schrevel (Health & Wellbeing Board Project Manager, East Sussex County Council) attended the forum to gather views from carers on the Health & Wellbeing Consultation. The consultation is the first step in developing a three-year plan to improve the health and wellbeing of local people at every stage of their lives. The consultation documents were based on detailed studies of local needs and focused on the issues that need most attention and where the biggest differences could be made. In groups, carers discussed two questions asked by Lisa, all the comments received formed part of the response to the consultation.
What is your biggest concern regarding your physical health and mental wellbeing and/or those you care for? Financial and health issues are the things that most carers have concerns about. About half the comments and discussions were about the ability of care continuing should the carer fall ill themselves and no longer be able to care. A selection of comments recorded are below: •
“Mental wellbeing of the person I care for and my wellbeing as a carer”
•
“Expectation that you should get on with caring role and mental wellbeing is not seen as a real issue – [caring is] something you ‘should do’ for a loved one”
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“Holding your life and caring role together leaves no room for addressing [your] own health and wellbeing”
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“Just ongoing day to day support”
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“Getting old”
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“Lack of freedom (which could affect your physical and mental wellbeing)”
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“What happens to my cared for person if I go into hospital”
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“I’m in a bed, I can’t communicate, I need a drink. I’m helpless and I can’t see anyone to recognise my need for a drink. It’s terrifying”
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“Respite goal posts moving – used to be for me (the carer) now for the cared for”
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“Lack of regular respite”
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“Getting proper and quick assessments for problems e.g. brain injury, dementia”
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“Isolation, loneliness”
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“Getting overweight and immobile”
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“Worrying about finance”
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“Shifting funding for carers to the cared for – more expensive and hard to cover the costs”
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“Having a need and no-one noticed”
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“Not being treated as an individual but being pigeon-holed”
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“Going to people for help and advice and no-one being able to recognise my needs or do anything because they are too busy”
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“I need someone from Social Services who understands autism to do a proper assessment of needs for my daughter and carers’ assessment for me that will change things this week – NOT NEXT YEAR! – otherwise both of us will end up with a nervous breakdown”
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“Losing control and no-one has noticed”
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“Worried about where the health service is heading – what will it be like when we are older?”
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“Everything (systems, policies etc.) being insecure and changing all at once”
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“The rumours that all the major health services will be catered for in the same hospital”
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“The biggest problem is having to deal with the community learning disability team in Hastings – they are driven to assess people to reduce the budget and do not look at a persons’ needs. They are driving me to insanity!”
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“The lack of any real planning for carers services”
What single thing would make the biggest difference in addressing that concern? In this discussion a majority of carers felt that a big difference could be made if service providers would listen to them and communicate better. Improvements to respite care and help with/training in back care problems and in health care issues of the person they care for, was also felt to be highly important by about a third of the carers. •
“Right services at the right time not giving us pills for depression”
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“Sometimes it isn’t about funding it’s about people looking after each other in communities”
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“Support in the home is crucial”
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“I’ve taught myself to be resilient. We all need an outlet – shouldn’t let things build up”
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“Support for me as carer if I become ill (planned OK, unplanned needs greater consideration) “
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“People not being categorised and assumptions about how they are”
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“Society needs to change its perception of caring and disability”
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“Support for young people with mental health problems to get into and stay in work or college”
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“More support, less stress”
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“Respite – time for a break”
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“Having secure permanent accommodation with 24 hour support and direction and one top one encouragement/ motivation to get involved in creative activity. “
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“Transport links to hospitals and support services need to be radically improved”
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“Better quality Stroke Care Services”
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“Healthy eating”
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“Manual handling training to help avoid injuries linked to lifting”
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“Back care exercise classes – we used to have them – good for socialising, keeping fit and avoiding injuries especially if, like me, you have osteoporosis”
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“More resources, the person needing it and the cared for have to have trust and confidence in the provision”
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“People being able to really listen, recognise and help me”
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“It’s like holding a big weight and you need help, but you can’t put the weight down you need a call for help, and be confident that that help will know what to do and take action”
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“Training!!!”
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“Better working relationships between Health and Social Care”
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“Professionals having experiences of life and the real world of caring e.g. own homes, care homes”
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“Proper hands on training, nurses being able to care rather than being stuck at a desk”
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“Staffing levels – are they adequate?”
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“Make sure people are accountable for their practice and responsible for mistakes or poor practice – reading magazines, talking, gossiping to colleagues”
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“Improved health service with more funding”
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“Government policies need to reflect what carers are saying. Take on board!!!”
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“More ring-fenced funding in future”
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Presentation and discussion about the proposed changes to Hospital Services by East Sussex Healthcare NHS Trust (ESHT) ESHT provides NHS hospital and community services throughout East Sussex. The Shaping our Future Consultation concerns the provision of specialist stroke services, emergency and higher risk general surgery and emergency and higher risk orthopaedic services. The following attended the forum to discuss the changes and hear the opinions of carers: Stuart Welling - Chairman, ESHT Jayne Black - Deputy Director of Strategic Development, ESHT Catherine Ashton - Programme Director, Sussex Together/ESHT Consultation Sara Geater - Engagement & Equality Strategy Lead NHS Sussex
There have been a number of meetings about this consultation which carers have attended and all comments from those meetings and this forum will form part of the consultation response. Introduction by Catherine Ashton Catherine began by giving a brief introduction to the consultation. She explained how NHS Sussex is working closely with ESHT and that the three areas they are consulting will be reconfigured to create effectiveness and better care for patients. She assured carers that these changes will only affect a small number of patients and emphasised the importance of carers and relatives being involved in the proposals. She explained how throughout the consultation there have been a number of different ways for the public to make their views known, at all events staff and board members have been available for discussion about the proposals. In particular, carers were invited to give their views at a focus group held in conjunction with ESHT and East Sussex Local Involvement Network (LINk). In preparation for the consultation Care for the Carers attended meetings of the Primary Access Points (PAPs) 1 to ensure that carers’ views were represented. Subsequently, Care for the Carers has been a key member of the Consultation Advisory Group.
1
Primary Access Points (PAPs) is the term used by ESHT to describe the key clinical departments
within ESHT (e.g. maternity, cardiology etc)
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Catherine said that ESHT and NHS Sussex understand that the proposed changes could increase travel costs and time for patients; this is a big concern for carers and will be fully considered when making the decisions. She reassured carers that all other services will remain at Eastbourne District General Hospital. She then outlined the improvements the proposed changes will make: •
There will be dedicated beds for elective surgery which should prevent cancelled operations.
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The stroke service will be available 7 days a week on one site instead of being spread across 2 sites.
•
Teams will work with patients around discharge planning to ensure that the minimum time is spent in hospital.
•
Changes to Trauma & Orthopaedics are part of ESHT involvement in community services. Outcome for patients better with these proposals – e.g., reducing hospital stay.
Jayne Black gave an overview of the Primary Access Points (PAPs). Jayne explained that for last 18 months ESHT have been working on 18 strategies and have developed models of care highlighting the services needing to be improved. Cancer treatment crosses all specialities especially General Surgery and provision is incorporated into all areas. At the moment patients have to travel to Brighton & Maidstone for radiotherapy treatment but an investment of £30 million has been made to build up cancer facilities in Eastbourne so patients do will not have so far to travel for treatment. The aim of the changes is to reduce the number of patients being admitted to wrong area, ensure they are seen by a senior Doctor as soon as possible, leading to shorter hospital stay and reduction in beds required. Following discharge support at home is being looked at as part of the work on community services. She stressed that no decision has been made; the board are waiting for outcomes from the consultation at the moment. Jayne reassured carers that Accident & Emergency Departments will be preserved at Eastbourne District General Hospital and The Conquest Hospital, Hastings.
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Maternity Services do not form part of the current consultation, ESHT are working with a broader group of physicians with Sussex Together to ensure that mothers can be given the best possible care. Cardiology treatment is linked with Emergency & Acute Services, in Hastings they operate a Triage service and then refer the patient if necessary; this will be starting in October in Eastbourne District General Hospital. Q:
Are there enough Doctors to cover 24/7 Stroke?
A:
We aim to have good high quality care on one site. Consultant led emergency service, available 7 days per week. Seamless care will include Neighbourhood Support Teams – teams across county helping to support people either at home or in Community Hospital. Help with discharge and continue support at home.
Q:
Are GP’s informed of all these proposals?
A:
Yes, GP’s are informed of all discussions throughout the development and strategy and they have a say. Stuart Welling reiterated that most GP’s are united and confirmed there is no intention to run down either hospital. Significant sums of money are being invested in both hospitals to create a centre of excellence.
Q:
Deep concerns were expressed about travel times between Eastbourne and Hastings sites.
A:
An independent company had been commissioned to undertake travel surveys at different times of day, including visiting times. The majority of patients will be taken by ambulance and the road network is difficult between the two sites.
Comment: One carers’ husband suffered a stroke 4 years ago on a Sunday evening. He was admitted to the DGH where there was insufficient care – no scans, no consultant available and therefore appropriate treatment was delayed. Her husband was not seen by the consultant until the next day. She would rather have travelled to another hospital to receive the correct treatment, as every day they have had to live with the consequences of the outcome. Her husband was also at the meeting and agreed with these comments.
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Q:
A carer stated that he felt ESHT had made their minds up and these proposals would be implemented anyway?
A.
Stuart Welling responded that he needed to articulate his views with conviction as this was a genuine consultation. The big issue is where we locate services – access over quality. What do we want in East Sussex? There needs to be more flexibility over carer’s needs and working more closely with other organisations.
Q.
A carer highlighted the need for health teams to liaise closely with carers, who are often advocates and play a major role in the recovery of the person they care for. Individual patient needs should be recognised and liaison with carers and family. Carers add value to nursing staff and often supplement what nursing staff should do.
A:
Stuart confirmed the pilot work with ESHT and Care for the Carers – concentrating on training NHS staff on the needs of carers and those they care for. This work will be implemented over next 6 months or so. Nursing staff should be aware that the basics of care are just as important as nursing. Improvements have been made on all aspects of care and treating patients.
Q:
Concern was expressed about the additional financial pressure on carers if having to travel between hospitals. Support must be put in place for carers for visits and appointments.
A:
This will require a multi-agency approach and will be taken on board.
Q:
Concern about Eastbourne’s increasing population and whether DGH can cope with this? Do we need two centres of excellence?
A:
Stuart understands people’s concerns that their hospital is under threat. Health care in East Sussex will improve if the right decisions and investments are made now. Investments are being made in cancer, A&E, renal unit and maternity. The number of patients affected by the reconfiguration will be a small percentage. Stuart Welling confirmed that there needs to be 500,000 people to sustain a District General Hospital and there are .75 million people in East Sussex – not enough critical mass of patients to support two centres of excellence. Obstetrics need at least 5,000 births to sustain consultant lead unit. We currently do not have 5,000 births in Eastbourne, Hastings & Crowborough. Consultant
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lead obstetrics for high risk, but only 5% of mothers need this. Appreciated concerns about transport between hospitals and effect on families. Q.
Could visiting times could be relaxed for carers – this would surely assist staff and speed up recovery of the patient?
A:
Important point. Matrons need to be given flexibility over visiting hours in interests of patients if carer wants to work with nursing staff to enhance care of patient. He would hope that Matrons would agree with this suggestion.
Evaluation of the Forum Everyone who attended the forum was invited to complete an evaluation questionnaire. There were a number of comments about the accessibility at the venue and these have been passed on to the Committee at the village hall. Over half of those attending the forum care for over 50 hours per week. Overall the majority of those who completed the form felt that the event was good, very good or excellent. People were asked to record their feelings at the end of the meeting – many had a mixture of feelings and the results are below.
How do you feel at the end of today's meeting?
Confused 2%
Listened To 17%
Frustrated 2%
Satisfied 22%
Informed 19%
Supported 7%
Happy 14%
Inspired 5%
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Sad Angry 5% Enthusiastic 2% 5%
.
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East Sussex Carers focus group 13th September 2012 Catherine Ashton (SOF Programme Director, NHS Sussex), Jayne Black (Deputy Director or Strategy and Development, ESHT) & Stuart Welling (Chair, ESHT) formed the panel and gave an overview of the proposals for change in stroke services, emergency general surgery and emergency orthopaedic surgery.
We asked: “How many people are aware of the consultation?” Answer: 34 people attending the event knew about the consultation and the proposals
Questions to the panel following the presentations: Travel times •
Recently taken 50 mins between St Leonards Warrior Square to Bexhill so the figures in the document (travel times) don’t seem accurate..
•
One man who had himself suffered a stroke said “I would rather have had the chance for a better outcome would have travelled an hour or more to receive higher quality care.”
Access and Quality •
More flexibility of visiting hours needs to be built into the system.
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Medical excellence needs to be centralised.
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Needing to advocate for cared for person, while cared for person is in hospital.
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Difficult and concerning for carer if they cant be there carer will go in and do the job that hospital staff should be doing i.e. food and fluid, basic nursing.
•
Extended travel time – financial concern and impact. Carers need to go into the hospital.
East Sussex Carers’ Forum Report | September 2012
Appendix 1
•
Support in place to help people get to and from the hospital to help support people.
•
How do you support people to travel between centres? Carers having to make own way home, if at night?
Suggestion – is it possible to relax visiting times for carers who are contributing to the care of the patient?
We asked: “What are your concerns about stroke proposals?” •
How will specialist units deal with people with multiple health conditions? E.g emergency bowel surgery for patient who then has a stroke – but if each unit is on different sites, how will patient get best outcome?
•
Time it takes to get to hospital, not practical to get from Camber to Eastbourne in 45 mins.
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Can’t afford specialist nurses! Can’t recruit now. If you haven’t got the staff you can’t run an acute centre.
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People are dying before getting to hospital in other areas.
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Ambulance service doesn’t want it!!!
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If you are in hospital you want visitors! Part of getting well!
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As a carer – don’t want to have to travel miles and miles to see stroke specialist
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Impact on discharge plan if carer unable to attend due to distance.
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Surely there is a finite capacity space when particularly at EDGH – particularly on college / St Wilfreds expanding – how can full services be accommodated?
•
I don’t believe what was said about SECAMB – the paramedics I have spoken to do not agree. If you have a stroke at Camber, it may be the best service waiting for you in Eastbourne but at 5pm Monday to Friday you will be dead before you get there.
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What are the demographic / economic implications for centralising services in Eastbourne and Hastings?
East Sussex Carers’ Forum Report | September 2012
Appendix 1
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Will there be facilities for relatives to stay at either hospital particularly at initial emergency / critical stage if they have to travel much further?
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What are the downsides to centralising to one site?
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NHS Clinical strategy o immediate stroke care; ambulance service (very efficient) o good paramedics service for some site trauma units o one site of excellence means the best care and recovery (whatever journey time)
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Stroke patients need specialist care available 24/7. If that means travelling this is better than having a mediocre service.
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One site or a specialist unit doesn’t automatically guarantee excellence. This is achieved by excellent management and training – well motivated and knowledgeable staff.
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Carers provide essential support in ensuring patient has their laundry, dentures, spectacles, hearing aids etc – all often overlooked by ward staff.
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Family / Friends / Carers are valuable advocates for a very ill patient and often provide essential contribution to fluid and food intake during their recovery i.e. support form carers often help to improve outcomes for frail patients.
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How would bed numbers be calculated to ensure the size of unit matches the population it serves?
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What if, having centralised, units end up not functioning as hoped? E.g. not 7 days a week, the one scanner is broken etc.
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Centralised sites can then result in de-skilling staff if they then see fewer patients with those conditions.
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If bed is not available in special unit when required, how will they get most appropriate care?
East Sussex Carers’ Forum Report | September 2012
Appendix 1