Long Term Conditions

Themes from Long Term Condition events

Published on 14 June 2016

To understand the opinion of local patients, carers, and other local stakeholders, we held six engagement events between September and November 2013 and asked ‘what does good support look like?’ for people with Long Term Conditions.

Representatives from the community, patients, carers and professionals attended and there was a vast amount of information gathered. The comments have been listed as themes to make the information easier to read and are not in any priority order.

Participants in the engagement events took the time to give information regarding their perspective of the provision of current services for specific conditions. The following provides a synopsis of the views gathered from those who attended the events. Some individual comments and views have also been included.

1. Community services

The main point raised was that it was felt that there was a lack of communication and co-ordination of care between acute, GP and community settings. People felt that there needed to be more resources available in the community setting, in terms of specialist nurses, rehabilitation teams and community pharmacists.
Having specialist groups out in the community for exercise and education was a very popular suggestion, both in general terms and also condition specific i.e. follow up after cardiac and pulmonary rehabilitation and balance groups. More services out of GP practices i.e. dialysis, eye clinics, long term condition clinics, pain clinics. More mobile screening units i.e. respiratory conditions, bowel conditions etc.

It was highlighted that people tend to go to A+E as they don’t understand or know about other services available and they can’t always access their GP and their GP often is not fully aware of the community/voluntary services available either.

As a consequence of this there is an overuse of emergency ambulances, which is seen as a waste of an expensive resource.

Not all areas use the case management approach and it was felt that this approach would help to co-ordinate care and ensure that people had one person to contact instead of having multiple team members involved in their care. This would help alleviate the problem of not understanding who they need to contact for what.
Following on from this it was suggested that it would be better if Multidisciplinary Teams were used in all areas and an acknowledgement that this needs facilitation otherwise it is difficult to sustain.

The importance of specialist nurse was raised many times for different conditions, in order to provide unique, individualised advice and treatment.  Some patients are not happy when they are discharged from Specialist Nurses and left with no point of contact for medical advice and are often not happy to be discharged back to GP. Patients feel there has been a reduction in Specialist Nurses.

2. Acute care

Hospital is not always the best place for elderly patients and the majority of the feedback suggested people would prefer to be treated in the community setting. Can there be a GP service in A+E?

People felt that there has been a reduction in beds available for Neurology patients. There was frustration at the admission/discharge processes and there was a concern that patient may be discharged when they weren’t fully ready to cope at home.

It was felt that discharge support services are being supplemented by voluntary organisations but their resources are limited. Specific feedback on this highlighted that the AgeUK 'home from hospital service' very good as is the Easingwold District and Community Centre project.

Comfort rounds are really important especially for patients with learning difficulties or dementia and should happen routinely. There was a suggestion that the blue butterfly (which denotes someone has dementia) should be on patient band not just put above bed so it is with the patient all of the time to help staff be aware that they may have some specific needs.

It was felt that there was a lack of understanding of dementia/anxiety and learning difficulties in hospital when patients are admitted for another health reason and that taking time to listen and address the 'minor' things so that anxiety is reduced is really important.

It was suggested that the staff on the wards are trying to provide the best service they can but often do not have the time needed.

The Patient passport (which is a document that should come in and out of the hospital with the patient) should have more emphasis on 'beliefs' so these can be catered for in the acute setting.

It was also suggested that in some areas of within healthcare settings that more signs needed to go up to promote hand hygiene both for staff and visitors. 

3. Out Patients

In some departments there is a lack of seating in waiting areas and patients reported that they struggle to make appointments at suitable times or change them if need to.

4. Social services

People have felt the reduction in day centres has been very challenging for both patients and carers.
There was a feeling that respite care is easier to arrange for people over the age of 65 years and there is a gap in services for people aged between 19 and 64.

In terms of home care packages there was frustration around the time slots for care not being long enough for care to be given and that it is hard to establish a routine as the timings of the visits are difficult to regulate.
There was a gap in the services around the provision of 24 hour care at home. It was reported that the waiting times for home adaptions was quite considerable in some cases. When care is provided by private contractor’s people wanted to understand who ensures standards and who monitors them. 

5. Diagnostics

It was suggested that there need to be improved access and shorter waiting times in terms of having the tests and getting the results. Where appropriate, results could be given in the community setting rather than having to travel into the hospital.

The importance of early diagnosis and hence early physical, psychological and financial support was highlighted.

6. Carers

"Carers are just as important as patients". People wanted proper support for carers as they generally know the patient better than anyone - they need to be valued as a person who has important information who can help the patient be treated holistically. It was felt that there was an inequality of support for carers of all ages.

7. Communication

It was highlighted several times that patients and carers believe that in healthcare  "no one talks to each other"  and that different staff groups cannot access all relevant patient notes. Sometimes interaction between clinicians is difficult due to confidentiality issues, which patients don’t always fully understand.

“Communication between primary, secondary and community care is not good enough” and the suggestion was that we should have IT systems that talk to each other so information can be seen in all healthcare settings. There should be standard patient held records with information that they are asked for repeatedly like Past Medical History, who is involved with care and normal observations etc.

If you have more than one Long Term Condition that have specialists working in different trusts it was felt that the clinicians don't always communicate effectively with each other, which is frustrating for patient and carers, especially if this means that they have to have several separate appointments. Can there be Skype consultations when people have more than one consultant so they can all talk together in one setting?

Sometimes people struggle to contact the specific healthcare professional needed as not aware of contact details and there are too many people involved in their care. 

Healthcare professionals still use too much jargon and they need to ensure that the patient and carers have understood all of the information as sometimes people do not feel that they can ask for it to be repeated as they are aware of time pressures on staff. It was suggested that patients should be given a copy of key points discussed in a medical appointment so they can take it away and digest it, which would be really helpful for people who have learning difficulties/memory problems Information need to be given in the most appropriate way for the individual patient. 

It was felt that there was a general lack of communication about services available in the community setting and how to access them. People felt if they could have access to this information they would be better able to help themselves.

8. Coordination of care

Consistency of healthcare professionals is important to people and often there are many people involved with care - there needs one person to co-ordinate it and communicate between services.

The importance of multidisciplinary team meetings in the community between Specialist Nurses and GP's was highlighted.

Peopled like the idea of Case managers/community matrons co-ordinating care and signposting to services in the community to provide a single point of contact for all healthcare needs. The importance for a more co-ordinated approach between health and social care was also highlighted in order to provide patient centred care. It was felt that there is only any intervention in a crisis and healthcare needs to be proactive not reactive.
Patients often have multiple appointments on different days due to different conditions and they are often fitted around clinicians rather than patients.

9. Access to services

The need to ensure that all services are physically accessible by disabled people and sometimes access is limited in York, so people feel like they are trapped in their own homes.

It was reported that there is good access to disabled toilets as you can apply for a key from the council - but maybe this should be a fob so it is easier to use by people with difficulties using their hands.

More promotion of exercise to disabled people – ‘instructorbility’ – disabled people who train as gym instructors to make it more appealing to disable users as there is a lack of understanding in main stream gyms re: environmental needs of patients with disabilities – i.e. temperature, equipment settings, what level of help required.

10. Engagement ideas

Use community councils, libraries and supermarket notice boards/on receipts to promote events and health related issues.

Use multimedia like Twitter, Facebook, e-mail, texts, talking point (Alzheimer’s UK), websites, and free advice phone lines.

However, it was highlighted that the internet should be used with caution as not everyone has access to it so it should not be the only method of communication.

Use the press/local magazines.

Go and speak at specialist groups.

Use voluntary service networks, letterbox drops and support groups.

We also need to be aware that sometimes people do not want to engage but it is about providing the opportunity if required.

11. GP services

More open access to GP appointments especially Out of hours appointments. GP’s are often seen as the gatekeeper of information and they are not always aware of the voluntary services available in the area.

Sometimes there is reduced confidence in GP if patients have been seen by Specialist Nurses as GP’s cannot be an expert in every condition. Guidance on how to make an appointment with a GP of choice - this is variable across practices and within practices as it is important to see same GP so they know you but sometimes this is difficult.

The option for double appointments is really useful and should be available in all GP practices. A suggestion of giving the patients an option of filling in a 'priority sheet' for their appointment while they are waiting to see GP to order their thoughts was put forward.

People felt that there needs to be a bigger recognition that depression is often associated with long term conditions and needs addressing. Also, more coverage in GP practices about men’s health issues.
People were also aware that there are a number of GP appointments that get wasted when people do not attend and this needs to be dealt with.

12. Individualised Care planning

It is important to understand that patients have different needs and care should be tailored accordingly, in all healthcare settings.

Personalised Health Budgets/ Individual Service Funds are seen as important so patients can plan their own care packages but some patients don’t understand full implications of doing this and they need more support.

13. Voluntary services

It would be good to have a directory of services, which is accessible by all – this is a project in progress at the York CVS.

The information available at GP practices regarding voluntary services is not up to date. Voluntary services need to market themselves more. Commissioned on a county level rather than a service level so people rely on local smaller organisations to survive i.e. Easingwold District and Community Centre provide a discharge from home service.

Specific feedback included singing groups and memory café’s for Alzheimer’s patients ran by Alzheimer’s UK – need more funding to expands to more areas across the CCG (currently only in Malton, Whitby, Pickering and Ampleforth).

Voyage - sitting services but high demand so long waiting times. “Pocklington support services are excellent”, "AgeUK in York - befriending service is free and very good" and 'in safe hands' service is very good - by AgeUK.

14. Mental health

Mental health should always be considered with a physical condition and it was felt that currently there is little or no support for people with emotional/mental health problems. It was felt that people living in York do not receive the same choice of mental health services compared with neighbouring cities and often when people do get referred there are long waiting lists for counselling services and event longer waits for full mental health assessments.

There should be clearer advice for carers about the different stages of dementia.

Loneliness is on the rise and this can lead to mental health problems in the future – need to deal with this now. Social groups to help reduce the risk factors associated with mental health - i.e. social isolation but they are not always accessible by everyone who could benefit from them.

Should be support with Mental Health in A+E and awareness of how to deal with dementia patients when in the acute setting needs to be raised.

Young people with long term conditions often feel isolated and that the future seems bleak.

15. Patient choice

Patients don’t always know what their choices are – “there are good services out there that we don’t all know about.”

People asked if there is a real choice for patients for services?

When services are run by different services/authorities they are difficult to access and people often give up.
Increasing costs of equipment used to keep people in their own homes so sometimes people have a limited choice due to finance i.e. 'life-line' is going up in cost in April, 2014.

Sometimes people feel that there is a postcode lottery for services, not a real choice.

16. Pharmacy

Wastage of medication - not just patients sometimes waste occurs due to prescribing. Issues with non-compliance with medicines - mental health verse public health.

There needs to be a better delivery service in rural areas and repeat prescription via the internet  are not always convenient for people who do not have access to the internet. 

More information and monitoring around medication as some lead to reduced mobility which increases the risk of other problems and social isolation.

Medication is taken off you when you go into hospital - this doesn’t help with routines, especially if you are elderly or have mental health needs.

Sometimes national trials for medications for Long Term Conditions raise expectations.

17. Self - care

More promotion of self-care.

Use of Telecare so people can support themselves and not be admitted to hospital.

Understanding of barriers to self-management/exercise is key to the design of self-help self-referral to exercise groups.

People lack confidence as they do not have enough information about their conditions.

There was interest in the Expert Patient programme to promote self-care and empowerment.

Patients wanted to be buddied up with peers as this would be useful for coping strategies – so it is not always ‘medicalised’ but this shouldn’t replace medical advice.

Motivation drops when patients don’t feel well so important to have someone to keep them going. Important that carers can come together and share experiences/network.

“Too simplistic to talk about self-care as there is a mismatch between us expecting people to self-care and supporting people to do it by having the services available.”

Raise more awareness of the long term effects that alcohol abuse can have on people - dementia, liver problems etc.

18. Transport

Not enough hospital transport and often left waiting for a long time for pickups and drop offs, which can make an appointment last the full day.

Very strict eligibility criteria to qualify for hospital transport – or funding for transport.

There was a suggestion that there should be a transport system around the hospital to the different departments as the entrance of the hospital is a long way from the bus stop.

Some voluntary organisations provide transport at a reduced cost or for free if people are attending their sessions but this is hit and miss depending on your location and not everyone knows about the voluntary services.

It is expensive when having to use a taxi, some people can claim this money back but not everyone knows this.
Some specific examples included the Red Cross being very good for patient transport, the 'Goole pilot project' and the Easingwold District and Community Centre offer a voluntary transport service that is bespoke to patient’s needs.

The need for more accessible transport especially in the evenings to reduce the social isolation.

19. Rehabilitation

The need for more therapy rehabilitation in the community and acute setting was highlighted. Therapy services have now taken away the over 65 years criteria and now see anyone in the community over the age of 18 years, which is positive.

Rehabilitation programmes in the hospital need to be more functionally specific to patients needs for discharge and that more private space for rehabilitation within the hospital setting is needed so people do not feel as self-conscious.

The reablement scheme does not seem consistent across the area and is only available for 6-8 weeks – then what happens? Rehabilitation focussed on occupation when appropriate.

Specific feedback included excellent experience with community physiotherapy in Selby.

20. Finances

People spend a lot of time worrying about finances and in some cases people have to “decide whether to eat, heat or have health services".

People struggle to know how to apply for benefits and what they are entitled to. It was reported that some people end up losing their job as they are off sick with no proper diagnosis. Needs to be more advice as to where to get employment and help with getting jobs.

21. Staff

Feel they are unable to 'monitor' as always dealing with acute problems. Patients feel that sometimes staff work in silos only concentrating on their specialist areas and not treating patients as a whole.

Condition Specific Feedback

Some people took the time to give information regarding their perspective of the provision of current services for specific conditions.

  • Rheumatoid Arthritis - need better peer support, often not clear what the symptoms are as they can be quite variable, lack of awareness around the different symptoms that can present. Seen as an older persons disease but it isn't. Specialist monitoring of bloods for medication - stopping lab print outs so it will be more difficult for patients to monitor. Lack of communication between Rheumatologists and GP’s. www.yorkra.org.

  • Rare Long Term Conditions – “Doctors scared to treat some Long Term Conditions as they are quite rare.” Very little information/support groups for people with rarer Long Term Conditions. Struggle to find support locally, difficult to even get involved with national voluntary groups. Sometimes healthcare professionals don't want to say if they have never heard of it.

  • Eating Disorders - organisation set up by a lady who suffers with an eating disorder called 'Fighting Eating Disorders' (07515701734). No specialist centres in York - the nearest ones are in Leeds, Manchester or Hull. Find that staff do not know what to do with patients with eating disorders. No psychological support available. Her experience was that there was no peer and little medical support in York. Patients have restricted choice to specialist centres due to funding. Very strict criteria for psychological support (i.e. goes on BMI).

  • Renal - Valued renal service but the hospital can be less patient centred. Difficult to get reliable transport for dialysis sessions. Often tired after dialysis and the hospital transport is often not prompt which leaves you feeling even more tired. Would benefit from a welcome pack to provide all information patients require. Kidney patients association – so able to talk about how they feel. Would be better if dialysis could be offered in community settings.

  • Falls - always advised to call ambulance and then because the patient had a number of long term condition and see as complex they are admitted straight to hospital - even if no real acute problem - would prefer to be treated at home.

To read the feedback from previous events please click here.