navigating the nhs maze in england

Navigating the NHS Maze in England 11th March 2014 (London) 18th March 2014 (Leeds)

Evaluation Report

Page | 2 Genetic Alliance UK

Genetic Alliance UK

Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions. We are an alliance of over 160 patient organisations. Our aim is to ensure that high quality services, information and support are provided to all who need them. We actively support research and innovation across the field of genetic medicine.

Genetic Alliance UK undertakes various projects and programmes that adds evidence and knowledge to improve health service provision, research and support for families. These initiatives include:

Rare Disease UK, a stakeholder coalition brought together to work with Government to develop the UK Strategy for Rare Diseases. www.raredisease.org.uk

SWAN UK (Syndromes Without A Name), a UK-wide network providing information and support to families of children without a diagnosis. www.undiagnosed.org.uk

Published by: Genetic Alliance UK Unit 4D, Leroy House 436 Essex Road London, N1 3QP

Telephone: +44 (0)20 7704 3141 Email: Website:

[email protected] www.geneticalliance.org.uk

Registered Charity Numbers: Registered Company Number:

1114195 and SC039299 05772999

Author: Dr Louisa Petchey

[email protected]

Photo accreditation: Genetic Alliance UK Published date:

April 2014


Acknowledgements

For their informative contribution to the ‘Navigating the NHS Maze in England’ workshops in London and Leeds, we would like to thank Catherine Foot (The King’s Fund), Fiona Marley (NHS England) and Faye Williams (Healthwatch England).

Our thanks also to Pfizer and SOBI for providing the funding that made these workshops possible and free to attend for patients and patient representatives.

The Genetic Alliance UK team


“I am concerned that my local services have

been cut and that I have no local service.

How do I find a specialist? [My] GP didn’t know. I had to

try to find information myself… very frustrating”

(Leeds)

Introduction

The Health and Social Care Act 2012 introduced far-reaching reforms that changed how the NHS in England is structured and how commissioning, accountability and regulation processes work.

These changes have been in place since April 2013 but many patients/ patient groups are still grappling with how the new system fits together and how best to advocate for and influence service provision to benefit themselves or those they support.

This is the case particularly within the rare disease community, where poor information provision and care coordination is already an issue.

When questioned1, the majority of patients/ patient advocates revealed that they believe it is harder to ‘navigate the NHS maze’ for their condition than it is for other, more common conditions.

1 As part of a survey carried out prior to the workshop events


Aims Understanding the way services are planned and commissioned in the NHS is key to patient empowerment. Through the ‘Navigating the NHS Maze in England’ workshops, held in London and Leeds, Genetic Alliance UK aimed to provide information on the new NHS to the rare disease community in order to improve understanding, and increase awareness of the opportunities for patients and patient organisations to engage with and influence the system.

The workshops aimed to enable patients and patient groups to:

Access the services and support they need;

Advocate for improved services and treatments for their condition;

Monitor the provision of nationally commissioned services;

Play an active role in service development at all levels.

Motivation of attendees 38 patient representatives attended the London event and 30 attended the Leeds event. Bursaries were available for small, poorly resourced groups and overall, nearly a quarter of attendees applied for the bursary and were reimbursed for their travel expenses.

A survey of the ‘Navigating the NHS Maze in England’ workshop attendees revealed that many felt they lacked sufficient knowledge of the NHS and were not confident in their ability to access the NHS services required by themselves or those they represent2.

By attending the workshops, patients/ patient representatives hoped to gain a greater understanding of the NHS system as a whole in order to access services or lobby for new or improved service provision. Many attendees also expressed their intention to disseminate what they learnt to their family or patient support group. Another key motivation was the opportunity to network with other patients/ patient groups in a similar situation in order to exchange experiences.

2 A survey prior to the workshop revealed nearly a third of attendees (London and Leeds) would describe their knowledge of the NHS as ‘poor’ or ‘very poor’; and that they were either ‘not confident’ or ‘not at all confident’ in their ability to ‘navigate the NHS maze’ for their condition. Full data and how this changed after the workshop can be viewed on pages 13 and 14.


“Very useful day. Shame speakers had to leave early as I think they could have contributed to discussions later in the day” (London)

Structure of the day After a brief introduction from Buddug Cope (Director

of Development, Genetic Alliance UK), attendees were invited to record their initial thoughts on the day, including what they hoped to get out of the workshop and what were the key questions they were hoping to have answered during the course of the day. This was followed by three talks and

an open discussion session, with a break for lunch.

The first talk gave an overview of the structure of the NHS and outlined who is responsible for commissioning and regulating each aspect. At our London workshop, this was delivered by Catherine Foot (Assistant Director, Policy) from

The King’s Fund. This talk was given in Leeds by Genetic Alliance UK’s Nick Meade (Director of Policy).

The second talk was from Fiona Marley (Assistant Head of Highly Specialised Services, NHS

England). This gave a much more detailed

examination of specialised services. The final talk was from a representative of Healthwatch England, Faye Williams, who outlined the role of her organisation in advocacy as well as the role of local Healthwatch bodies.

After each talk there was extensive opportunity for attendees to ask their questions to the speakers. This

was improved upon in Leeds in line with feedback from the London event, which highlighted the usefulness of having speakers present throughout the day:


Outcomes

Response to the talks A considerable majority of attendees found the first two talks, which overviewed the NHS and focused on specialised services, particularly helpful. The third talk, which examined the role of Healthwatch England, was also found to be helpful by many attendees.

A number of attendees expressed a desire to better understand the role of Healthwatch among the key questions they hoped to have answered (examples above), making this talk a key part of the day.

This suggests that it was not the talk itself that some attendees did not find useful, but that there was some dissatisfaction with the ability of Healthwatch England and local Healthwatch bodies to capture the experiences of patients affected by rare conditions.

There was some excellent discussion on this issue at both the London and Leeds workshops. For example, attendees highlighted the problem of relying on local Healthwatch bodies to raise a significantly large ‘signal’

“How can we ensure that our

service users have a voice in

Healthwatch meetings that cover such a

broad agenda?” (Leeds)

“What is Healthwatch

England’s efficacy when it comes to rare diseases?”

(London)


in order for it to be cascaded up to the national body when the number of patients affected by rare diseases is, by definition, small and are likely to be geographically dispersed. Without improved communication, they pointed out, it would be impossible to determine whether care for rare disease patients was failing locally or nationally.

Faye Williams was keen to follow this up with Healthwatch England. This is a very positive outcome since it has brought the specific needs and issues of the rare disease patient community to the attention of a potentially influential body in improving healthcare standards.

Genetic Alliance UK look forward to future opportunities to work with Healthwatch England to improve their capacity to monitor the quality of care received by rare disease patients and advocate for improved services where failure exists.

Key themes addressed After the talks, attendees were given the opportunity to participate in a facilitated discussion session. Key themes of interest and concern were identified from the survey attendees completed at the start of the day, and this was used to inform and shape the discussion.


The session was an opportunity to address any specific questions that attendees had hoped to find answers to; but also to enable networking between patient organisations and the exchanging of experiences and ‘hints and tips’ for access and advocacy. The themes discussed in this session included:

In response to each theme, the Genetic Alliance UK team provided useful information on related policy work, such as:

Genetic Alliance UK’s campaign initiative, Rare Disease UK (RDUK). RDUK is a stakeholder coalition brought together to work with Government to develop the UK Strategy for Rare Diseases3, which was published by the Department of Health in November 2013. The Strategy includes commitments for improving care coordination, diagnosis and transition for rare disease patients.

Genetic Alliance UK’s Patient Charter, which outlines recommendations to improve the new framework NICE is using to determine whether or not medicines for very rare diseases are made available through the NHS4. The Patient Charter was developed following a workshop with representatives of Genetic Alliance UK’s patient group membership.

Patient representatives also then shared their advice on how to go about getting a referral from a reluctant GP, which included asking for a written letter outlining the reasons why they consider a referral to be unnecessary.

3 The UK Strategy for Rare Diseases is available here: www.gov.uk/government/publications/rare-diseases-strategy 4 Genetic Alliance UK’s Patient Charter ‘Patient perspectives and priorities on NICE’s evaluation of highly specialised technologies’ is available here: www.geneticalliance.org.uk/hstcharter.htm

Who is in charge of coordinating my care?

Why does it take so long to get diagnosed?

How is the quality of NHS care measured?

How is transition from children’s to adult services managed?

What is the process for accessing medicines?

What can I do if my GP won’t refer me?


It was interesting that the themes were consistent between both the London and Leeds event, highlighting that many of the same issues are experienced by rare disease patients regardless of where they live.

An additional issue discussed exclusively at the Leeds event was about the accessibility of specialised services and fears over service closures:

It is possible that this may reflects the fact that London is often where clinical specialists are located; so that the need to travel in order to receive specialised care was less of an issue for London attendees. Two additional topics were also raised exclusively in Leeds:

Patient passports5: what are they and where can I get one?

Raising awareness and improving education of clinicians in rare diseases: the ‘students4rarediseases’ initiative6.

These are both patient-driven initiatives to combat some of the issues specific to rare disease patient care and fantastic examples of where the ‘Navigating the NHS Maze in England’ workshops were used as a great knowledge sharing and networking event by participants.

5 Patient passports are a way of tracking an individual’s care needs between services. More information on patient passports can be found here: www.sthelensccg.nhs.uk/Your_Health/Health_Passport.aspx 6 More information on this initiative can be found here: students4rarediseases.org/


“I will have to revisit the details but very helpful. Answered

questions I didn’t know I had” (Leeds)

Improved confidence and answered questions At the end of the workshop, attendees were invited to record their thoughts on the day and whether it had achieved what they had hoped.

The vast majority of attendees said that the workshop had answered ‘most’ or at least ‘some’ of the questions they had before the day.

Attendees were also asked at the beginning and end of the workshop how they would describe their level of knowledge of the NHS and how confident they felt about navigating it. At both workshops, the level of knowledge and confidence notably improved by the end of the day.


Take home messages The reaction to the workshops was very positive. When asked at the end of the day what they would take away from the day’s workshop, it was clear that many felt that they now had the tools to better navigate the ‘NHS maze’, and how and who to lobby for improved services.

Another important outcome for attendees was networking. This included learning more about Genetic Alliance UK and the work we do to support, campaign for and unite patient groups; as well as collecting the contact details of individual patient groups in order to coordinate future opportunities for collaborative work.

This was in line with both the aims outlined by Genetic Alliance UK at the beginning of the project, and the aspirations attendees recorded at the beginning of the day (these can be viewed on pages 6 and 7).


“I am just refreshing my memory from the

workshop. I am really pleased with the ‘answers to questions’ section [of your follow-up email].”

(Leeds)

Follow-up email In order to provide a bank of information that captured the discussions of the day and could be referred back to, the Genetic Alliance UK team provided a tailored follow-up email for each workshop. This was something that there was a lot of enthusiasm for on the day and has provided a useful resource for subsequent enquiries looking for information into these areas.

The email included further details of ongoing areas of policy work relevant to the ‘key themes’ addressed in the facilitated discussion sessions, and a summary of the advice shared by attendees on the day. This was collated in an easy to navigate ‘Answers to questions’ section, which linked-out to further information.


“Useful contacts. A lot of information about the NHS which will be useful when I have had time to receive the presentations by email and analyse

them again” (Leeds)

Each attendee was also sent a copy of the speaker’s presentations and, with permission, the contact details of all those that attended their workshop event.

After the day The feedback from both the London and Leeds events were entirely positive. Patient representatives from small patient groups were especially appreciative of the travel bursaries that enabled them to attend without cost implications. Attendees welcomed the fact that the workshop provided a good opportunity to meet and network with other groups, particularly outside of London, and expressed their interest in attending similar events held by Genetic Alliance UK in future.

Unit 4D, Leroy House, 436 Essex Road, London, N13QP +44 (0) 20 7704 3141 [email protected] www.geneticalliance.org.uk Registered charity numbers: 1114195 and SC039299 Registered company number: 05772999

navigating the nhs maze in england

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