Health CommitteeWritten evidence from Sue Ryder (LTC 48)

1. About Sue Ryder

1.2 Sue Ryder is a charitable provider of health and social care services across the UK. We provide specialist neurological and palliative care in a range of environments including community and home-based care delivery alongside our hospices and neurological care centres.

1.3 We care for people with long term and progressive neurological conditions including Parkinson’s disease (PD), Huntington’s disease (HD), multiple sclerosis (MS), and dementia; and sudden onset conditions like stroke and acquired brain injury. We also support those at the end of life with long term conditions including heart failure, renal failure, and Chronic Obstructive Pulmonary Disease.

1.4 We work across communities with patients, their families, commissioners, GPs and other health and social care professionals. We are funded through charitable donations, contracts with health commissioners and local authorities and revenue from our network of more than 400 shops across the UK.

2. Overview

2.1 We very much welcome the Committee’s inquiry into support for people with long term conditions. As a provider of specialist services we are becoming increasingly concerned about the system’s current capacity to support those with complex long term conditions.

2.2 To ensure people have access to coordinated and integrated care that improves their health and care outcomes, a system must be created that predicts and responds to people’s needs along the entire trajectory of their care pathway.

2.3 Due to the complexity around treating and managing a long term and progressive neurological condition there are certain aspects of the management of care that require specialist attention.

2.4 While not a common long term condition like diabetes, neurological conditions affect more than 10 million people in the UK, of which over 1 million are disabled by their conditions and over 350,000 people require help for most of their daily activities.1 With significant improvements that have been made in supporting people to manage their condition the number of people living with neurological conditions has risen.

2.5 In response to the area of the inquiry that seeks an assessment of the readiness of local NHS and social care services to treat patients with long-term conditions within the community we have highlighted some of our concerns and priorities to ensure the delivery of better care, and improvement of patient outcomes.

3. Integration

3.1 For people living with long term and progressive neurological conditions that require specialist support, integration between health and social care services is vital to ensuring they have access to the right services at the right time. In some instances people can find themselves falling between the gaps between these services because of the lack of coordination and planning. This means they are not accessing the services they need nor achieving their desired health and care outcomes.

3.2 This was the case for one of our day service users with MS who lives in a housing association property where she moved to five years ago when her needs worsened. The progression of her condition since then has meant that she can no longer use the stairlift or wetroom upstairs and has been forced to convert her dining room into a bedroom. The only toilet is downstairs in an outhouse which is unsuitable. After an assessment from an occupational therapist it was recommended she have an extension. However neither the housing association or local authority could agree on who would pay for the adaptation. She has recently found out that neither party will pay and if she wants to live somewhere more suitable she will have to move again. This lack of coordination illustrates the tensions at a local level. Inappropriate planning between the local authority and housing association with little regard for and inclusion of health has meant that it is the service user that loses out, unsupported by a system that does not adequately meet her needs.

3.3 The opportunity for commissioners of health and care to collaborate in Health and Wellbeing Boards (HWBS) and develop a Joint Health and Wellbeing Strategy (JHWS) for the local community is a key step forward to ensuring the most appropriate services that meet an individual’s outcomes are designed.

3.4The new HWBs provide the opportunity for integrated planning to be stimulated and a consistent approach adopted across the country. We hope they will establish the right mechanisms which will make integrated working a reality and improve the lives of people with complex long term needs and those at the end of life.

3.5 Many of the people Sue Ryder provides care for live with progressive neurological conditions such as multiple sclerosis, Huntington’s disease or Parkinson’s disease. These individuals will live in the care system for many years. Evidence collected for Sue Ryder indicates that these individuals benefit from services that address their specific needs resulting from their condition to help them to achieve their desired broad outcomes. The HWBs’ duty to deliver a JHWS for their local area will put in place a local strategy on which integrated commissioning to plan these appropriate services can be based. To do this JHWS must make a proper assessment of the needs of their local population and identify the needs of these condition specific groups. Data collection through the JSNA must be improved.

3.6 The JHWS will only be as robust as the data on which they are based. The strengthened role of the JSNA should mean that a more responsive system to condition specific local need is developed.

3.7 We are concerned that the preparations for the new system and implementation aren’t robust enough. Determining the needs of the local population and the tools that are needed to make this a reality will be central to developing integrated commissioning that improve health and care outcomes.

4. Data Collection and Service Planning

4.1 Sue Ryder recently ran a freedom of information request to local authorities in England asking about the specific design and delivery of services they offer for individuals with neurological conditions. These results have been compiled in to the report The Forgotten Millions. Responses were received from 131 local authorities. Only 5% of the local authorities surveyed were able to provide detailed data on the number of individuals with neurological conditions that they provided care services for. 72% of the authorities indicated that they do not collect detailed data categorising specific neurological conditions. 79% of local authorities indicated that they do not have a specific commissioning strategy for services for people with neurological conditions.2

4.2 The results, particularly the lack of data available to identify those living with neurological conditions in local communities is concerning. Because local authorities are not collecting this data they don’t know the number or range of neurological conditions that people in their communities are living with and therefore limited in their capacity to plan services accordingly. As a result it is likely that many of these individuals are not receiving the best services for their needs which will impact on their health. It is telling that only 10% of local authorities have a strategy in place for people with neurological conditions. This evidence indicates that the initial needs assessment is crucial in determining the strategies and the shape of future services.

5. Care Coordination

5.1 Individuals with a long term and progressive neurological condition require specialist support from a multidisciplinary team including specialist nurses, physiotherapist, occupational therapist, speech and language therapist. The fluctuating nature of their condition and speed at which their condition changes means they need timely access to specialist services responsive to their needs.

5.2 A multidisciplinary team approach enables the development of tailored care plans to support patients on a long term basis after their diagnosis. This approach means their care can be anticipated, so they are less likely to reach a crisis point needing emergency care. However, it is concerning that more than a quarter of people with Parkinson’s have never spoken to a PD nurse specialist.3

5.3 Individuals with a long term neurological condition should have access to a neurology specific nurse and/or coordinator. The role of a specialist coordinator and nurse is essential in providing timely access to help with symptom management, planned and anticipated care, and giving support to individuals in understanding their condition.

5.4 We have heard of instances where specialist nursing roles are not being replaced due to limited resources. In one case we are aware of posts being replaced by general nurses who don’t have the expertise to manage someone with a complex neurological condition. As a result individuals are not getting the care and support they need from experienced specialists.

MND patient said: “MND is such a lonely disease—even when you are surrounded with family and friends and doctors and nurses who are absolutely brilliant, you can still feel alone. Having someone on hand to talk to who really understands what the illness means and how it will develop and affect my life is really helpful. Sometimes you just want someone to be there who can advise on the practicalities of living with MND, who can understand what’s coming at me in the future and put forward my point of view on the care I want.

“When things aren’t going so well, it will be nice to have someone down to earth to rely on as a day-to-day support mechanism to talk about what’s happening to me and to give me the encouragement I need to keep living with a long-term illness.”

5.6 Joint working between local authorities and clinical commissioning groups has to be encouraged in order to deliver care that fits around the needs of individuals.

5.7 When care is not coordinated it is likely that service users will fall between the gaps in the system. Unsupported in this way they can lack an understanding of their choices and entitlements, become isolated and unable to access the care they need. This can lead to their health deteriorating faster than necessary and potentially ending up in hospital in an emergency admission.

5.8 In 2009–10 14% of people with Parkinson’s disease, MS and MND that were discharged from hospital after an overnight stay were readmitted within 28 days as an emergency.4 There has also been a 32% increase in emergency admissions to hospital for this group.5 This indicates a failing of the system to anticipate people’s needs, support people in the community, and a lack of continuity of care.

6. Self-management and Prevention

6.1 More common long term conditions such as diabetes can be prevented by making better personal lifestyle choices and staying healthy. Progressive neurological conditions such as MS, MND, HD and PD cannot. Secondary prevention therefore is vital in making sure those with existing complex long term conditions like COPD and progressive neurological conditions such as those listed don’t deteriorate faster, are kept out of hospital and have an improved quality of life. Services such as specialist community programmes support those already living with a long term condition with a combination of practical advice and planned activity to help them manage their condition, whilst remaining active in their community.

Sue Ryder Manorlands hospice—respiratory programme

A Sue Ryder hospice runs a respiratory programme that offers practical and emotional support to help people manage their condition. Breathing exercises are followed by education sessions including how to help breathing, dietary advice, pacing and fatigue management, and what to do if things get worse. The service increases people’s confidence, improves and manages their symptoms and supports them to develop a personal care plan. A respiratory group offers advice on monitoring and improving breathing difficulties. Breathing recovery postcards have also been developed for the community to offer advice at home. Information and support such as this should be available to individuals within the community, as well as in healthcare settings such as hospitals and GP surgeries.

6.2 Health and wellbeing boards must consider the importance of secondary prevention in their health and wellbeing strategies. These play a vital role in helping to improve the wellbeing for those with long term conditions. Commissioners must accordingly make adequate provision for specialist day services such as the respiratory programme that integrate health and care support.

7. Designing Person Centred Services

7.1 Designing innovative services that are tailored to the needs of individuals is at the heart of Sue Ryder’s vision. Person centred care drives the development of our service delivery. We fully endorse the principle of personalisation where it improves service user outcomes. We supported the development of Demos’ report Tailor Made6 which explored personalisation and what it means for people with complex and long term needs.

7.2 We believe in giving people meaningful choice and control; this has to be supported by availability and access to information, advice and advocacy at the right time, and in the right format to enable people to plan and make decisions about their care.

7.3 The success of making sure people have choice and control over their care will depend on the quality and variety of local services available to them, and support available to access them.

7.4 The Tailor Made report raised some particularly poignant policy issues in regards to person centred care for people with long term and progressive neurological conditions. It argued that the personalisation agenda needs to be expanded, and the rhetoric to reach beyond personal budgets.

7.5 The outcomes that individuals identified as being important were: remaining independent; having a job or volunteering; maintaining links with their family; and being with people they know. In order to achieve these, multiple services must work together.

7.6 Although we see personal budgets, and direct payments in particular, as a tool to empower people to have more control over their care they may not be enough to achieve multi-service integration and deliver the outcomes people want.7 We believe that for control over individual care to be meaningful there must be a vibrant market place of multiple services which people can to choose to purchase from.

7.7 Health and care commissioners need to work with providers to ensure they are able to respond to local needs and encourage the development of a marketplace that meets the needs of the local population. In turn packages of care need to be developed by CCGs, local authorities, providers, service users and their families that support individuals to access person centred universal services.

7.8 There should be provision within the JHWS to include a local strategy for the health and wellbeing of those in their area living with a neurological condition. With their role to coordinate health and social care, HWBs and their responsibility to develop JHWS, will be key to delivering a strategic commissioning framework that includes the opportunity to pool resources and plan integrated services to deliver improved user outcomes.

8. Education and Training

8.1 Given the complex nature of some long term and progressive neurological conditions, it is essential that generalist health and care professionals are appropriately trained in neurology and managing symptoms appropriately.

8.2 We hear from staff across our neurological care centres that the knowledge of general health professionals in neurological conditions can be limited. A member of staff in one of our care centres often accompanies a resident on a hospital visit to make sure the hospital manage their condition appropriately. We have developed a hospital passport to ensure that on admission staff have all the information they need in order to manage the resident’s care in the best way according to their needs and preferences. We would like this practice to be encouraged in all care settings.

8.3 One of Sue Ryder’s strategic aims is to share best practice and knowledge in providing specialist care for neurological conditions. We have education programmes in our centres that continue to drive up quality internally but share good practice in managing complex neurological conditions across the locality. A student nurse mentoring programme at our centre Hertfordshire is also helping to raise the profile and understanding of neurological conditions in everyday practice.

9. Long Term Conditions and End of Life Care

9.1 The system currently does not make adequate provision for end of life care for those with long term conditions, including neurological, COPD and heart failure. End of life care should be a central part of the care pathway of long term conditions.

9.2 The recent end of life locality registers evaluation found that one of the biggest challenges in end of life care is ensuring that non-cancer patients with terminal disease have access to the same level of services as cancer patients, with the choice to die at home if they wish.8 It is essential therefore that these patients, including those with complex long term conditions like COPD and neurological conditions are added to the register.

9.3 Specialist nurses and multidisciplinary teams should play a vital role in encouraging the identification and recognition of those with long term conditions who are at the end of life.

9.4 We have found that our hospices are coming up against challenges with COPD patients. COPD is a long term and terminal condition. Although COPD patients can be sick for a number of years many don’t believe or are aware that they have a terminal illness. As a result many don’t have an Advance Care Plan in place by the time they come in contact with the hospice, nor have they had conversations about the trajectory of their condition with a health care professional. We have experienced the same for our neurological patients. Patients therefore can find it very distressing and daunting to discover how ill they are when they are referred to the hospice. When they come to the hospice they are supported to understand and manage their condition and to develop an Advance Care Plan.

9.5 Palliative care is different for people with long term conditions. Staff and services need extra equipment and training. Referrals need to be much more timely and more needs to be done on educating health professionals on better understanding and communication of conditions.

9 May 2013