Here is the brief update of my South West London carers forum for July. As mentioned, I have not been blogging much due to working on my 2nd book on unpaid mental health carer experiences. I still run my carer groups including helping out West London NHS health trust on their Black Asian minority carer peer group.

However back to South west London.

The following speakers for July were

Phoebe Averill – PHd Student at Kings College
Carol Ellis – Carer speaking about her son’s new book
Ros Spinks – NHS England Commitment to Carers programme
Myself on Why unpaid carers must hold to account

PHOEBE AVERILL PRESENTS ON HER PHD PROJECT

Phoebe from Kings college University spoke about focusing on safety and quality of care in community mental health Services. So as part of the research, she wanted to invite carers to share their views. Phoebe wanted to give us just a little bit more info about the research as the problem of patient safety hasn’t really been a given as much research which is limited, although there is a growing amount of research from those interested in this area. Still, it’s mainly focused on inpatient mental health services. In actual fact, most mental health care experiences are actually in community settings.

So that’s really important that patient safety in community mental health settings are researched as well. So that’s what she is trying to do with the research. Phoebe is speaking with families and carers of adults with mental health problems in the community services. What she is trying to find out is what kind of “safe and unsafe” care means to the carers in this context, because it’s not very well Understood. She would like to know what types of safety issues you worry about as carers and any ideas about what can make community mental health care safer and would could improve the services. There really is no right or wrong answers, it is about hearing carers experiences and opinions.

Phoebe also has spoken to services as well as to healthcare professionals, but it’s really what the carers views are? So what does the actual study involve? It will be a discussion with other carers since that will be what kind of format unpaid carers prefer.

For more information about the project I have included a screenshot below.

There were quite informative questions from carer members of the forum, but I have a lot to catch up with. So will move on to the next presentation.

• Carol Ellis and her son talks about his new book

Carol’s son Shaun Ellis started off talking how he ended up with depression due to the death of his father. His book “A Gentle Breeze: Living with depression” focuses on how he managed to survive attempted suicide and his journey battling depression.

Shaun wanted to highlight such experiences through his words and actions. This is why he chose to write a book about his experiences. In this book Shaun describes all the techniques he used to battle his depression. As well as sharing his story, he wants to reach out to fellow suffers and encouraging them to seek the help they need.

Shaun then read a couple of passages from his new book, which led to questions coming from the carer members of the forum.

I have placed a link for those interested in the book below.

A Gentle Breeze by Shaun Ellis

Ros Spinks from NHS England & Improvement presents on the Commitment to Carers programme

Ros from NHS England kindly engages with some of my carer groups I run online for half of London. She spoke about her role as one of the regional carer leads, however she covers London, while the rest covers England. Ros spoke about how the ‘commitment to carers programme’ is linked to NHS Englands long term plan, which is actually 2 years old. Ros talked about one of the big areas which are the quality markers in primary care. These are a set of standards that carer’s should expect from any GP practice across the country. However it is not mandatory, which is a bit of a challenge, because it can be difficult to get GP practices to do things in different ways, not because they’re bad practices, but due to such challenges.

Another quality marker is on identifying carer’s because there are still issues regarding the identification of carers in health and social care. It might be that some people do not identify themselves as carers, but that is not the point. It is up to the NHS and social services to help people understand and help educate them on what support they can get as an unpaid carer.

There was a Q & A session from members of the South West London carer forum.

One question was on why are the quality markers not mandatory.

Ros mentioned there has been discussion to make those mandatory, but raised the option that some GP practices work differently and would learn better from other GP practices in a network. Sometimes it is better to try different options ranging from training to rewards if GPs do well in identifying carers. Ros mentioned there is some leverage with the CQC as they use the NHS England quality markers to see if GPs are actually listening to their patients and carers.

Another question focused on what would Ros like to see in place to bring equality to unpaid carers to the level their patients have.

Ros felt she would like to see fantasic carer support centre that actually has the resources to care for the unpaid carer. She would also like to see a carer’s champion just like what they have in the GP practices in the London bourough of Hilligdon. Those in the GP practice could act as the carer champion, which could be the receptionist or GP and surprisingly it does not cost anything, they can help being carer friendly, identify carers and help refer them.

Another question which was very important came from a carer wanting to know what secondary care was doing for carers and if they follow NHS England & Improvement quality markers.

Ros was delighted such a question was asked and she mentioned hospitals were working towards a carer’s card or passport, actually some hospitals already have this and it is a recognition that a patient has someone who cares and that carer does need support and to be kept informed, infact the best secondary support from hospitals is that the carer will be involved in all the care decisions made and not just told what will happen or the carer be seen as an afterthought.

There were many other questions raised from carer members, but below was the one raised by myself on the commitment standards as I was interested in how NHS England’s Commitment for Carers has been progressing since it’s release around 2014. Ros responded to all of them, where some of the responses I have added below since at the time of the document it mentioned a few tasks were ongoing.

1. NHS England to raise the profile of what a carer does and how they can be supported with health care staff.
2. NHS England signed up and supports and promotes annual Carers Week campaign.
3. Establish a NHS England board level ‘Carer Champion’ and support NHS England board level members to shadow a carer.
4. A senior NHS England Carers Group to take ownership of the ‘Commitment to Carers’ document and NHS England’s support for carers.

Ros mentioned it is Jenifer Kenward who is on the senior management team and she links to the departments health and social care as well.

5. Collaborate with carers’ organisations to establish how carers award schemes might be extended to commissioners to support improving the experience of carers across England.

Ros responded these would be your Carers UK and Carers Trust organisations.

6. NHS England in partnership with NHS IQ to hold a national NHS Young Carers event to support how young carers can be better supported and the wellbeing of young carers promoted by the NHS.

Ros responded that usually three times a year, every region has a certain amount of young carer champions that come together to help drive the young carer’s strategy.

7. NHS England to support a Carers Champions Network bringing together the healthcare and carers groups.
8. NHS England will continue to implement the Equality Delivery System for the NHS, involving staff, patients, carers and the community to ensure equality is embedded within all of its core business including workforce development.

Ros mentioned NHS England has to do this, its practically a legal duty, she went into more detail about this.

9. NHS England is committed to supporting innovation in the NHS and will ensure that innovative ways of engaging with and providing care for carers are considered through the national innovation fund schemes.

Priority 1 Raising the Profile of Carers

10. NHS England to support the relevant bodies, including Health Education England, to support the use of packages for health care staff that increase carers awareness, and support staff to identify, involve and recognise carers as experts, and as individuals with their own needs, choices and aspirations.

On this question, Ros stated that Health Education England do have a training package that actually includes all frontline staff to increase carer’s awareness. Ros still mentioned there still is a problem to make training mandatory and she would very much like to see that.

11. NHS England to support the relevant bodies in signposting carers to information and advice about support available. The reason I asked Ros this question was because I felt even though resources are out there for carers, it seems not many carers are using them. I am aware there are social perscribers, but they seem geared for older adults to combat loneliness or for patients.
12. NHS England to contribute to increasing the awareness within the NHS of the duties and functions of local authorities with regards to carers.

Ros spoke how NHS England has made big strides on this task specifically for Integrated Care Systems (more on that in my September carer forum for Lewisham where Ros spoke about ICS Changes). Ros mentioned there has been much improvement and better awareness from a strategic level to the local NHS level.

13. NHS England and NHS IQ to liaise with carers organisations and the Royal College of General Practitioners (RCGP) in order to support their work on identification, implementation and sharing of best practice models. (Again, I tend to bother the Royal College of GPs because I was interested in an update to the RCGP carer’s strategy when Judith Cameron was the RCGP Carer leads).

Ros responded this would be on the quality markers from NHS England, but there was also recently a series of events from the Royal college of medicine regarding the focus on unpaid carers.

Priority 2 Education, Training and Information

14. NHS England to investigate approaches to measure the skills, confidence and knowledge of carers and potential benefits on care and carers.
15. Data sharing: As part of the Patient Online programme, NHS England to scope the potential for carers to access the GP medical records of the patients they care for, where applicable, and the patient has given their consent.

Ros mentioned a huge amount of work has been done on this since 2014, although due to COVID-19 happening she admits work on this has slowed down. Ros states hospitals should have the access to pull patient GP data if a patient turns up to hospitals very unwell and unable to speak for themselves.

16. NHS England’s new ambitions for End of Life Care, to be published in June 2014, will include the intentions for support for carers and bereaved relatives.

Ros again talked about the personalisation agenda as there has been a lot of work done on this. We spoke about the lead for end of life care who is Sherone phillips, although Ros mentioned there is a regional lead and a national lead for End of Life care.

17. NHS England to support timely dementia diagnosis and the best available treatment for everyone who needs it, including support for their carers. For example, the revised Dementia Enhanced Service will include an offer of a health check for carers and signposting for information and support.
18. Develop a programme of work to support the health and wellbeing of carers through the community nursing strategy.
19. NHS England’s widening digital participation programme to reduce inequalities: ‘100,000 citizens trained in basic online skills to boost health literacy’ will apply to carers as well as patients.

Ros mentioned this is NHS digital and a lot of work has been done on this, but there is more to do.

Priority 3 Service Development

20. NHS England will promote and work towards parity of esteem for carers so that mental health and wellbeing is considered and supported alongside physical health needs.
21. Through work on developing the House of Care toolkit, NHS England will work to bring together all the relevant national guidance, published evidence, local case studies and information to support carers to be informed and engaged in care.
22. NHS England to include carers in work around developing standards and service components for personalised care planning to help ensure carers are integral to the care and support planning process and are consistent with the National Voices principles of care and support planning.

Ros stated this does happen and that it is important to involve the public, patients and carers into the planning of personalised care. A good example is the work done with people with learning disabilities and those that support them regarding annual health checks.

23. Patients who can benefit will have the option to hold their own personal health budget resulting in direct benefits to carers, including feeling more in control and perceived health improvements.

Ros mentioned this happens through the personalised care.

Priority 4 Person-centred, well-coordinated Care

24. Scope how NHS England can most effectively support the RCGP and other partners in the work they intend to develop around carers.

I queried if NHS England also work closely with RCGP, RCPSYCH, RCM and others. Where Ros mentioned they do work across different programmes.

25. NHS England will consider how carers can be supported through commissioning of primary care including through future developments to the GP contract and enhanced services.

Ros mentioned at some point NHS England pulled back from this, but now there are discussions in place.

26. NHS England to work with NICE and other partners to develop measurement and best practice guidance in order to increase identification of carers.

Ros mentioned this happened last October, so NICE have issued guidence on how carers should be treated and it complementary to NHS England’s quality markers, it should not replace them. (I have posted a link below that might relate to what Ros mentioned).

https://www.nice.org.uk/guidance/ng150

Priority 5 Primary Care

27. NHS England to undertake a series of regional evidence summits for carers to establish an independent assessment of the evidence in order to capture, disseminate and encourage good practice.

Ros talked about how the above has happened and has probably morphed into innovated care systems. So this is how NHS England know how Yorkshire, Devon, Surrey have all these brilliant carer strategies, of there are other places as well.

28. NHS England to maximise opportunities to capture feedback and incorporate into discussions and work to improve quality and inform best practice.

Ros feels this feedback are from monthly calls from carers.

29. NHS England to undertake a piece of work to understand the impact of current commissioning incentives and system drivers in supporting carers. For example, through the GP contract, revisions to enhanced services for unplanned admissions and dementia.

Ros was not sure, it would be before her time, but it sounds like a one off piece of work, but can follow up on this with us.

30. NHS England to review current national processes in place to gather bereaved carers’ views on the quality of care in the last three months of life in order to address gaps in evidence.
31. Where commissioners identify the need for support, co-produce practical tools and a support programme of implementation with NHS IQ.

Priority 6 Commissioning support

32. NHS England to coordinate effective ways of working by developing partnership links between health, social services and other organisations, including the voluntary sector to establish how carers can be supported as effectively as possible.
33. NHS England to continue to work with the Standing Commission on Carers.
34. NHS England to remain a member of the cross government carers strategy board and will encourage and support carers
    organisations to play an active role in the Collaboration for Coordinated Care.
35. Establish an annual meeting with key partners including carers organisations to monitor progress and review objectives.

Priority 7 Partnership links

36. NHS England to continue as a corporate member of Employers for Carers.
37. NHS England to continue to implement and support established policies on flexible working, leave and emp

There were more discussions raised about NHS England & Improvement commitment to carers, but for more information you can check out NHS England’s Bi Monthly Carers Programme Lunch and Learn Webinar. The link is below.

This was a brief update for my South west London carers forum for July 2021.