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Microsoft word - getting to the heart of the matter final evlaution report.doc
North Derbyshire, South Yorkshire and Bassetlaw Commissioning Consortium
NORTH TRENT NETWORK OF CARDIAC CARE
GETTING TO THE HEART OF THE MATTER
EVALUATION AND FOLLOW-UP ACTIONS
LINkrotherham was approached by Rotherham Heart Support Group regarding
a seeming lack of services and support for people discharged from Cardiac
Services in Rotherham. LINk representatives attended a support group
meeting to gather the members’ views.
It was felt that when a patient is diagnosed with Heart Failure then they are
assigned a Specialist Nurse who is able to offer support, advice and
information when required. However, if somebody has a heart attack, heart
operation or other heart condition they are often treated and then discharged
with no additional support other than their GP.
Many people at the meeting expressed concern regarding support once
discharged from hospital; not just the medical support but also the
After discussion it was decided that a joint event would be hosted by
LINkrotherham supported by Rotherham Heart Support Group and the North
Trent Network of Cardiac Care Service Improvement team. This event would
ask people who had heart conditions what their experiences were:
• at diagnosis, • whilst receiving treatment, • living with the condition and • at any follow up they may have had.
The event was held on Thursday 7th July at The Carlton Park Hotel. Over 70 people attended the event to share their experiences. Five presentations were given:
• My life living with heart disease – Roy Goodwin, Rotherham Heart Support
• The benefits of support groups – Ken Wassall, Rotherham Heart Support
• Living with heart failure – Sarah Briggs, Community Heart Failure
• Living well with heart disease – Katie Taylor, Cardiac Rehabilitation
• Keeping active with cardiac disease – Glyn Burgess, Cardiac Team
Following the presentations, three workshops were held:-
• Life after a heart attack. • Living with heart failure. • Living with a heart rhythm problem.
Participants were then offered the opportunity to ask the expert panel any questions they had. The expert panel consisted of:-
• Dr Leonard Jacob – GP with Special Interest in Cardiology • Dr Rangasamy Muthusamy – Cardiologist, Rotherham Hospital NHS
• Liz Harris - Clinical Pathways Advisor, Yorkshire Ambulance Service • Sarah Briggs – Heart Failure Specialist Nurse, NHS Rotherham
Summary of the Workshop Discussions
Experiences of using local services and public opinions were gathered at the
three workshops and clear themes emerged. These have been summarised
below but full reports from each of the workshops and an evaluation of the
event is available separately.
Symptoms and Diagnosis
It would appear that the participants agree that symptoms can vary greatly
from individual to individual and from condition to condition.
Diagnosis also seems to vary, from the method of diagnosis, the level of
information provided and the support offered. Due to the trauma or shock of a
diagnosis patients do not always remember what has been said. This can
cause increased stress and upset for the patient and their families or carers.
The lack of support between diagnosis and the follow up appointment can
cause distress with patients having no information about their condition. The
lack of information after their initial diagnosis can cause stress, with any
queries or concerns not being answered or addressed until a follow up
appointment which could be months later.
Treatment varies from condition to condition but overall it appears the
information and support provided can also vary.
It is evident there is an apparent inconsistency with the level of information
given relating to treatment, this being dependent on the individual health
professional or department. Particular concerns were raised around
medication and the possible side effects.
Communication and Information
There appears to be an overall inconsistency in how and when information is
offered, with no set procedure for sharing information. The information
provided and the manner in which it is given seems to vary depending on who
a patient sees or which department they attend.
A participant said that when diagnosed with cancer a Macmillan worker gave
them information leaflets and said they would be contacted in a week’s time to
discuss and answer any questions. This positive experience does not appear
to be replicated for heart patients.
Feedback given at the workshops suggested that the processes for follow up,
condition management and support differed according to each condition e.g.
Heart Attack, Heart Failure, Heart Rhythm problems. It was felt this led to lack
of service consistency and confusion for service users.
Evaluation forms were distributed at the event and a total of 43 forms (61.4%
of attendees) were completed. These were analysed by Rotherham LINk
using Survey Monkey.
Of those responding:
• Almost 60% were aged 65 years and over • 42% were male, 58% were female • Almost 80% were living with a heart condition • Over 97% felt that the event was relevant to them • 98% found the information provided useful • 93% felt more confident about contacting their GP • 95% felt more confident about when to contact local heart care services • Over 97% felt that the format of the event was suitable and that the venue
• Honest, transparent workshops; excellent Expert Panel. • Thank you for a very enlightening morning – more of the same please. • Very good day. • Very, very informative. Need more – well done! • What a fantastic morning, networking with Community Heart Failure Service
• Great day. I feel more confident in contacting my GP and specialist nurse. • I found the event much more interesting and informative than I expected. Constructive criticism and learning points:
• Having more than one workshop in the same room creates communication
• Being very deaf, it was hard to hear when we broke up for our groups with
others talking. It would have been ideal if we could have had a separate room; otherwise a very good day.
• Very little information was relevant to my condition.
The full Survey Monkey analysis is available as a separate document.
Following the event and as a result of local changes with LINkrotherham, it
became clear that they would be unable to complete the write up of the event
and to utilise this information in the way that was originally planned. The work
was therefore handed over to the NTNCC Service Improvement team to
complete and take forward in the community.
Kath Cope, NTNCC Service Improvement Facilitator, has been working with
the relevant organisations in the community to understand local service
provision. This information is matched against the relevant themes that arose
from the event (see Appendix A). This offers an opportunity to understand the
mis-match between public expectations/experiences against the service
providers’ perceptions of service delivery.
Further work to share the intelligence gained at the event with the statutory
organisations is planned (see Appendix B). At the same time, this will be
shared with the interim organisation for LINkrotherham.
The work of Christine Dickinson and Catherine Wood (formerly of
LINkrotherham) in the organisation and delivery of this event, gathering of the
feedback and preliminary evaluation work is gratefully acknowledged.
ISSUE THEMES and PLANNED ACTIONS
People attending the event expressed clear views and opinions about what would make a difference to their experience of
using the local services. The following table numbers the themes that were raised along with the recommendations made
by the attendees.
1. Inconsistency around information given on diagnosis
A clear diagnosis and information pathway is needed which should consist of the following :-
• check lists to ensure patients understand their condition, are aware of the support available to them, and have the opportunity to
• provide information on self help and support including diet, exercise and benefits advice. • include a list of ‘Frequently Asked Questions’ as a check list for the health professional to use as prompts. • people need help and support at different times so this would be reviewed and updated on a regular basis.
Actions already planned within the community.
1a. The Heart Failure Specialist Nurses (HFSNs) at NHS Rotherham Community Health Services have developed and introduced
HELP, the Heart Failure Education and Learning Programme. This is an educational one day course, designed for patients who
have been diagnosed with heart failure. It is to offer and provide the information needed to help them manage their condition. An
information leaflet has been produced for patients to explain the purpose and aims of the course: “Understanding heart failure and recognising symptoms that may occur is important in keeping you well. Sometimes heart failure
can cause fluid retention and this is the main cause of hospital admissions in patients with heart failure. By monitoring yourself and
by recognising the early warning signs and knowing what to do, this can prevent hospital admission in many cases. Also medication
is vital for the treatment of heart failure and this course will teach you about what medications you should be on and any potential
side effects that you should be aware of”.
The programme was launched in June and is evaluating very well. ‘Patient Opinion’ is being used to log patients’ evaluation. After each course, the patients’ medications are reviewed and they leave to return to their GP with an individualised management plan – aiming to improve prescribing and optimisation of heart failure medication. This programme should support reduction in hospital admissions, promote expert patients and effectively manage episode of decompensation (fluid retention). A HELP patient pathway has also been produced. 1b. Additionally, in response to a patient who was in fluid retention and unresponsive to oral agents but not wanting to be admitted to hospital, the HFSNs have introduced an IV Domicillary Furosemide service. This is managed with the support of the district nursing service with home care supplied by continuing care package; IV furosemide boluses are administered twice a day to offload the fluid. The great success of this therapy is that the care is centred around the patient. This is gradually being offered to other patients but further promotion of the service to GPs and primary care staff is required. 1c. The HFSNs have requested support from the Cardiac Network Service Improvement Facilitators to promote the HELP programme across the Network and to assist with promotion of the IV Domicillary Furosemide service to GPs and primary care across Rotherham.
• 2. Inconsistency around information given to support patients and carers post-diagnosis – clinical
• After diagnosis, provide a leaflet or information document for patients, their families and carers to take away, with a follow up
appointment the week after to discuss and have any questions answered (similar to the process used by Macmillan for cancer patients).
• Send out a letter with a summary of the diagnosis and any treatment to be carried out. • Provide a one stop contact, 24 hour helpline for ALL patients living with a heart condition. This should also be accessible to family
• Clear guidelines on what to do if they are concerned about their health eg when a patient should call for an ambulance. • National publicity campaign regarding the symptoms of a heart attack which includes the less stereotypical signs and symptoms eg
other less typical symptoms as well as the more typical symptoms (‘tight band of pain around the chest’).
3. Inconsistency around information given to support patients and carers post-diagnosis – social
• Comprehensive information regarding benefits and returning to work. • Mechanism whereby doctors and nurses have information regarding support groups or other facilities to assist in recovery or living
4. Lack of access to psychological and emotional support
• Access to professional support regarding psychological issues. Patients don’t want to burden or worry their family and friends. The
psychological effects are very important to holistic wellbeing.
• Information shared about local patient/carer support groups.
5. Need for on-going support
• Mechanism whereby doctors and nurses have information regarding support groups or other facilities to assist in recovery or living
6. Use the experiences of real people
Patients and carers valued the opportunity to share their experiences of using healthcare and support services. Focus sessions,
experience sharing workshops, evaluations, patient satisfaction surveys and anecdotal feedback can provide valuable insight into
patient expectations and experience. Great value was attached to having the opportunity to share their views and experiences at
this event. Actions taken / actions planned
6a. Acting upon comments from a patient and an expressed desire to receive treatment at home rather that in hospital, the HFSNs
at NHS Rotherham introduced the IV Domicillary Furosemide service, supported by the district nursing service (please see 1b above
‘Closing the loop’ Action Plan
Complete event evaluation including feedback from workshops.
Meet with Heart Failure Nurses to share event intelligence.
Share reports with Maxine Dennis and Jo Abbott at NHS Rotherham and
Shafiq Hussain at VARotherham (LINkrotherham) (20-day LINk’s response may apply). Feedback of evaluation to Rotherham Heart Support Group.
Meet with Vanessa Bryan, Linkrotherham Support Worker, to hand back action Kath Cope / Rachel White
plan and discuss further steps. ‘Next Steps’ meeting with Maxine Dennis and Jo Abbott.
Following the above, further development to the ‘closing the loop’ action plan.
‘Closing the loop’ feedback with Rotherham Heart Support Group.
Rotherham Heart Support Group to agree a date
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