We would like to say thank you to everyone who attended the event. Their thoughts and feedback will be used as evidence as we move forward to develop the future model of care.
View the presentation
View the recording of the meeting including breakout room 2
View the recording of breakout room 1
- Support for patients with addiction, isolation, loneliness and vulnerability - A question was raised on how to refer vulnerable patients to palliative care who have addiction and live in Isolation. An example given of a man in mid 40s who had alcohol addiction, his GP was aware of the addiction and supporting the gentleman. However, the concern raised was how people like this have access to EOL services. There is evidence that people with addiction and loneliness have shorter life span therefore Palliative care needs to consider everybody regardless of their circumstances or location. We need to use the borough partnership to find effective way to link between primary care and primary care network and the services available in the borough to support those in isolation and enable them to get the support they need.
- Saving Pembridge Hospice – Questions were raised on why the Hospice in patient unit is still closed? Care needs to be delivered closer to home especially for patients in last days of their life. It is a vital part of the offer to the local people, particularly those who don't have any family to rely on. The ICS was asked to consider seriously bring it back into use as it is a very good example of what can be done to help people have a good death. Due to closure of these beds, patients and their families, carers have to travel further for EOL service which is not ideal. We need to consider making resources available locally. Nearly 2000 signatures have been collected to save the hospice and these will be sent to the ICS Programme team via email to email@example.com
- Simplify documentation – A call was made for Palliative care consultation documentation to be made simple and easy to read for local communities. The current materials need to be put in non-jargonistic terms.
- Out of hours’ access to nurses and care should also be considered as there is limited or no support available in some areas in evenings, nights and weekends. We heard an example of a patient receiving care at Royal Marsden Hospital who was continuously unwell. It was difficult to get access to a Macmillan nurse after 5pm and this lack of support when it was needed was very stressful for the carer and patient, who understandably wanted to avoid A&E at all costs as not an ideal environment for someone on chemotherapy.
- Patient’s choice matter – a patient’s story was shared. He was told he had days to live, he was not able to communicate well and without an informed discussion with him or family, he was suddenly moved to a care home where the wife could not visit. Patient died alone in a care home and the wife is now suffering the effects of this. about this. We need to improve the system to ensure everyone gets to choose and care is delivered at the chosen point of delivery on time without delays. This is another example showing Pembridge being closed have an impact on local people.
- Concerns about separating specialist palliative care from totality of palliative care support – we need to ensure a holistic picture is considered as part of the review. Continuity of care between places and forms of care is vital and when it breaks down it creates problems – the value of hospital, hospice, District Nurses and GPs are important to the patients in all this and must be considered together. - We will do this by connecting the work in the boroughs with local teams and the work of the NWL team working on the Community Specialist Palliative Care review, alongside other NWL teams working on other parts of the system.
- Flexibility is important - patients and their carers need to know that the patient can be moved between places of care, between caring agents as needs change and it needs to happen quickly without delays. It should include assessment of needs, rehabilitation, respite as well as ongoing care.
- ParaDoc Model of Care – A suggestion was made to introduce ParaDoc model of care in H&F. This is working very well for communities in Hackney especially for patients with hospice at home. The team comprises of a Paramedic and a Nurse in a car. They have support from the GP where required and have access to summary care records. Rather than taking the patient to A&E, they can carry out advanced assessment, prescribe medication, stabilise the patient at home. They carry treatment equipment along with a range of oral and injectable drugs, including End of life drugs. This was a good example of new developments to support people to remain in the community.
- Access to relevant Information is critical – we need to ensure that people who are caring for somebody have access to the record and the patient notes.
- Equitable Care provision – We need to consider equity in care provision. Improvement is needed in the current core services. Care plans should be based on patient’s needs (clinical and social).
- Improve integration between NHS service & Council Service – concerns were raised whether palliative care is joined up with the social care delivered by the local authority. A member shared their experience where her mum had 2 carers coming four times a day. Frequent change between carers did not work and was very unsettling, however the palliative care provided by the district nurses was excellent during working hours and out of hours. On three occasions, social carers called for an ambulance instead of having a discussion with the family. On one occasion, the district nurse had to visit to talk to the ambulance crew, she explained them that the patient was dying and did not want to be moved to the hospital. The crew agreed and left. The patient died peacefully after three days. After the death, District nurses remained in contact with the daughter to support her and came back to remove the catheter. Patient’s family felt supported through the NHS side but believe that the linkage between NHS service, Council service and voluntary service should to be looked at. It needs better integration.
- Guidance and training for Social Carers - A member shared their experience and mentioned she had an excellent support from District Nurses and GP. She felt very supported but suggested that guidance and training for social carers on how to make the last days of a person’s life palatable/comfortable would be helpful.
- Death Café / Coffin Club – a suggestion was made to explore having Death Café / Coffin Club in H&F. A charity organisation currently runs this service in a neighbouring borough. They have social gathering about beginning conversations about death, looking at death in a creative way and normalising the conversation.
- Spiritual support in EOL and education to facilitate this- Spiritual support / service is important for many ethnic minority communities. Training not only from the perspective of the patient whose life could be coming to an end soon but also for spiritual leaders so they have a better understanding of palliative care is important. Some faith leaders are actively involved and very aware however some are not because they are busy and stretched, supporting their congregation and their members. It was suggested that education and raising awareness amongst various communities would be very helpful.
- Inequalities in accessing services - We need to consider Inequalities in accessing palliative and end of life care for people from different ethnic backgrounds. Having regular death cafes will help raise awareness. We need to continue the engagement to identify inequalities. Sharon Tomlin from SOBUS mentioned there are different ways to engage with communities and offered to help with targeted listening around palliative care.
- Assessment tools in borough – A question was asked about how we take note of what the Community says about their extensive experience about life and death and the palliative care service generally? How is the feedback documented and how is it is it assessed? How is it fed up the chain within the system to create meaningful listening and dialogue? Response – Today’s conversation is an example of meaningful listening, our team has tried to reach out far and wide to ensure we hear from our local residents from all communities. All the feedback gathered for Specialist Palliate care will be submitted to the ICS programme team to inform the current review. One of our Campaign groups in our borough based partnership has a subgroup focussed on End of Life – this is an on-going piece of work and all the general palliative care related feedback from this event will be submitted to that group to help them shape their work and agree priorities. In terms of keeping this conversation going and getting input from our communities we are open to any ideas this group can share.
- Reducing Unnecessary Hospital admissions in EOL - Concerns were raised regarding the figures included in the presentation i.e. 49% died in hospital and the need to reduce this further. A member questioned how would this be achieved especially with the new bill it is going be even more problematic. The view was that most of these people died in hospital because there was no alternative place such as a hospice or a care facility or the social workers could not sort care for them at home. Response - In response to this the Chair stated that we don’t have an immediate answer to that at the moment but the intention is to design a system that tackles this issue. The ask for tonight is to feed views into the NWL system so that we can design a model of care for the future. The development of new model starts in mid-May and completes in end of August. The aim is to design something that is going to provide good quality care and equity of access and choice and all the things we've talked about in terms of being really important.
- Equivalent Support for people who do not associate with spirituality or religion – A view was expressed that we need to consider at what point do you start a conversation with them and at what point would you start to introduce the Death Café, Coffin club? Many people have different ideologies around death and we need to be mindful that not everyone would need / prefers spiritual support.
- Role of carers and how they are supported – A lot of carers are unpaid volunteers from voluntary sector or are family members and a lot of burden is often put on them. It is important to consider what is asked of carers and to think carefully how they are supported by the system. It was felt that carers are on the whole not recognised well by the system and need more support.
- Helpline/ Single point for contact – strong views were expressed around the need for the EOL patient and their family/ carer having a single person or a single team identified at all times that they can contact for advice and support. People need assurance that there will be somebody, a name person or a team easily contactable when needed and that decisions related to the patient’s care will be made on time without any delay.
- Consider Gender issue – a point was raised regarding the gender of carers, and the impact on women carers as also there is an increasing number of women living alone in H&F and in NWL. It has a real implication for what care might, could, should be provided at end of life.
- Promote information and understanding of available services for local residents – a simple and easy to read format for older population and people with Mental health conditions should be made available and readily distributed. This will help create awareness on what is available and who to call on when needed.
- Continuity of care for people with Dementia – changing carers often and seeing a different carer frequently is not appropriate for people with dementia- it causes confusion and is difficult to cope with. We need to lobby for longer carer calls than 15 minutes for people with dementia at that stage of life. Patients’ needs should be properly considered.
- Religious & Spiritual support for BAME population –feedback was shared from previous engagement with BAME residents outlining Islamic, non-Islamic and Jewish communities who said they prefer dying at home rather than in a hospital. They would like religious / faith leader or regular Muslim clerk or Imam be available in last days of life. There should be an emphasis on the need to build cultural awareness in the services.
- Break Language Barrier – Views were raised around language support for non-English speaking residents to be considered at each stage in care provision. Information should be made available in people’s preferred language, and interpreters should be made available at appointments or wherever required.
- Dignity, Choice, Personalised Care – there was an ask to consider patients’ needs. If for example someone wants someone religious, it needs to be someone they can relate to and not some appointed standard personnel. Dignity and choices is most important and it needs to be personalized.
- Quality and Consistent Care Closer to home – there was a strong view that care facilities need to be close to home as it is vital for both patient, their family and carers. Hospices at one point played a hugely valued role but are less available than previously. A lot of families would love to have the choice of hospice care as they don’t want their loved one to be in a hospital. There needs to be a consistency and transparency in services. We need to consider how we create consistency? How we make sure everyone has an equitable offer based on their needs regardless of postcode.
- Make Palliative care accessible for people – views were expressed that there's no point having an amazing specialist palliative care services if we don't have the palliative care accessible for the majority of people in the community. It needs to start with the primary care services. The primary care services starting from the GPs and district nurses are critical to leading the palliative care provision and to recognize when someone is reaching the end of life and to be able to provide the basic care to them because it will be the very few that will need the specialist palliative care provisions i.e. hospice provision. We have been living with death and dying for thousands of years without the existence of specialist palliative care. So now we are very fortunate that the specialist palliative care exists, but it's not necessary for the vast majority of people. If we have primary care services that can reach people where they live and if we have GP's that can go out and meet people in their own home, we will avoid a lot of unnecessary hospital admissions at the end of life. A member highlighted that we may not be using the specialist palliative care service the best way we could e.g. we are not using Royal Trinity Hospice at 100% of its capacity as it has 28 beds and a part of the hospice was closed during COVID. It caters for H&F and K&C so we need to consider if we really need to have two inpatient units for H&F (i.e. Royal Trinity and Pembridge)? From a practical and financial prospective, it is very expensive e.g. the palliative care provision in a Hospice bed that can be around £500 per day, while with someone at home, it may be cost about £100 or £150 a day. Key is to invest more in general palliative care and have the GP's/primary care services and district nurses leading on the palliative care provision.
- Empower Family and Carers to handle medication- Views were expressed that we should consider experience from other countries. It doesn’t need to be only a healthcare professional to give essential end of life medication to the patient at home. We can train relatives to give medication including injectable medication. This is happening in other countries and it saves a lot of distress for patient as they don’t need to wait for a nurse to come and give injection. It also helps the relatives/ carers to have a sense that they are helping that person to live better until they die.
- Care Homes as potential resource to support with EOL care – consider having gold standard care homes specialised in the provision of palliative care and end of life care for residents.
- Support for Family and Careers - a question was asked about what happens after death and consider how we should support the relatives and carer of the deceased patient. Psychological support, access to bereavement service is very important.
- Choice of dignified death at a chosen place – Patient’s choice is important and should be at the centre of care. A care/ nursing home is still very clinical. It is almost like a hospital and are often understaffed. It's equivalent of a hospital because people don't have a choice. Sometimes people go to a care home because they can't get into hospital. It is appropriate for some people, but it should not be a decision that's made for people without their choice. There are not enough hospices around and we need more hospices as it gives patients the feeling of cosiness, homeliness, warm personalised space/ environment that may be lacking if one cannot be in their own home. Hospices provide music therapy and all sorts of support and therapies to create a good death.
- Integrate knowledge sources– it was thought that our system is complex and not joined up with acute hospital, GPs, Care homes, Hospices. The challenge for the public and all partners is what our current infrastructure looks like and how we bring the good work together so it is understandable and integrated.
One thing you would like to change?
The following points were made
- Information hub / Recognised system – We need to build a recognised system i.e. a point of contact an identifiable team of people which is known to public (not just the doctors) that people can contact for advice or to get information on what services /support is available for them and what choices they have. We need a point of contact in our borough where people can contact when they think they need. Within that it is important that people feel they have actually got a choice and perhaps not every choice can be met but the option of having an informed choice and not being forced into making a choice that is good for the NHS because it is under pressure. We need to provide assurance that people have a choice which is going to be listened to and respected and as much possible met. It is important to have a choices recognised by system and to have the flexibility to change your mind if needed.
- Consider what is it about the hospice that we need to create in other settings and how we foster that? how we make this available outside hospice and in community?
- Remain updated - staff should be aware and be educated about the changes happening within the system.
- All the GPs & nurses need to feel confident about palliative care as they are the ones that are more in close contact with the patients and can give them options in terms of the care according to the people's wishes and preferences, they can make it make it happen and then all the other services would need to work around it to ensure people can die where they want to die.