Since April 2018 I’ve been working with the Greater Manchester Health & Social Care Partnership as Independent Chair of the Greater Manchester (GM) Carers Strategic Group. This group is overseeing the work underway to improve support for carers across the 10 localities which make up Greater Manchester. My first blog about this work and my motivation to improve support was published during Carers week in June 2018. Carers week 2018
Today, November 30 2018, is Carers Rights Day and I’d like to share with you some thoughts behind the development of an excellent publication called the Working Carers Toolkit for employers which is being launched today. GM supporting employers to support working carers
If you Google ‘Work life balance’ lots of advice appears as to how to achieve a good balance of your time and energy in work and in your personal life. There are plenty of tips for managing your time well at work and not letting work invade your personal time and other challenges in people achieving a good work-life balance
If you then factor in that 1 in 9 of the workforce across the UK combine caring for a loved one with paid work out of the home then the problem of trying to achieve any kind of balance is magnified. In Greater Manchester it is estimated that around 142,000 employees (ONS Census, 2011) have additional, unpaid, caring responsibilities in the home.
It is not surprising that many working carers end up exhausted or become ill themselves trying to juggle the demands of paid work and caring, never mind having any kind of personal life themselves. Many will eventually drop out of paid work altogether and Carers UK reported in 2017 that in their survey, 4 out of 10 carers had given up paid work completely to care for a loved one at home. Employers are also losing people with significant, valuable skills and experience which are then lost to organisations and the overall economy.
Every carer’s situation and job requirements are different and individual but there is no doubt that there are some things that employers can do to enable them to retain experienced staff and for staff to feel supported in juggling their job and carer responsibilities such as:
- Use of technology to work from home or dial into meetings where short notice caring responsibilities prevent them coming into the office
- Being able to have access to a telephone and privacy to make calls related to their caring role
- Flexibility in working arrangements around medical appointments for the person they care for, taking time off and then working replacement hours at a later time
I well remember the feelings of guilt of often leaving work early in Manchester on Fridays and driving down to Worcestershire to support my father in caring for my mother and then leaving at 5.00am on Monday morning to drive straight back into work.
I worried about being preoccupied at work due to stress and worry as my mother was approaching end of life care and was I doing enough to help my father and mother in the limited time I could physically be there with them both? In those last 3 years of my mother’s life there were also many emergency dashes up and down the M6 as my mother experienced crises, emergency admissions to hospital and where her life hung in the balance on many occasions. I juggled leave to make up some of the shortfall, made frequent phone calls in the times I wasn’t physically there with them and generally muddled through some of the worst times of my life.
Each working carer has their own story and challenges to relate and many like me will enjoy their jobs and want to keep them. Equally employers want to retain their staff and many can be unaware of the often hidden struggles that many staff experience until they reach crisis level and decide to leave.
Supporting working carers in Greater Manchester
As part of the work underway across Greater Manchester to improve support for carers this Friday November 30 – Carer’s Rights Day- sees the launch of the GM Working Carers Toolkit – interactive version for employers which provides support for employers using insight from the association of Directors of Adult Social Services in England(ADASS) and what working carers have related from their experiences.
In summary the toolkit describes, and evidences why supporting working carers is both good for carers and good for business.
In the toolkit practice tips, suggestions and resources for employers are provided which draw on reports based on feedback from working carers in Greater Manchester through the work of the Greater Manchester Health & Social Care Partnership, from Carers UK, Chartered Institute of Personnel and Development(CIPD) and ADASS.
A key part of the support that will be available in Greater Manchester will be the opportunity to take advantage of the umbrella membership of Employers for Carers from Carers UK, for Local Authorities, partner organisations and Chambers of Commerce to enable Small and Medium sized enterprises(SMEs) to gain free access to the wealth of resources available.
A customised website for Greater Manchester is being set up which also has provision for each locality to have their own pages too so that initiatives specific to different areas can be tailored to them as well as offering future opportunities to share experiences and learning across the region.
So do take a look at the information available from November 30 2018, and if you’re an employer in Greater Manchester, I’d encourage you to take advantage of the Greater Manchester Working Carer Toolkit for employers (print version) and especially check out the simple, short, self- assessment tool at the end to reflect on what you currently know, and do for your employees who are carers.
Remember supporting working carers is:
- GOOD FOR CARERS and
- GOOD FOR BUSINESS
If you want to hear more about the work underway in Greater Manchester to improve support for carers you can get a brief overview from a recent BMJ podcast where I talked with Anya de longh BMJ Patient Editor here: Carers Need a Voice
I’m wondering what records you keep personally, or can access online, to help you keep track of your life and I’m especially thinking about personal health?
Keeping track of my appointments, medications, symptoms
As some of you know my health took a downturn in my mid 40s and since then I have been managing a few Long Term Conditions. As I became a more experienced patient I realised that no one NHS organization had the full record of my health history and so I began to keep a simple record on my laptop that detailed dates of appointments, which clinician I’d seen, what had been said (that I could remember) and if there was any follow-up or monitoring to do.
I did this just for my own peace of mind as I was always asked what medication I was taking, what operations/procedures/blood tests/results I’d had and when, and what my current symptoms were etc.
As my history became more complex I used my own record as an aide memoire for me to take with me to appointments and it also came in useful as a briefing sheet for any new consultants/clinicians I met.
Then I heard that nationally the NHS was going to give patients access to the records that were kept by GPs and I thought great that will be an enormous help.
Online access to shopping and banking
As I have become physically disabled with arthritic and spinal problems I have come to use online services for many aspects of my life including shopping and banking. I started cautiously with banking online over 15 years ago and now the only thing I can’t do online is take money out or pay in cheques!
I’m not the only one as in 2015 the people who use internet banking was around 56% according to the Office for National Statistics.
And before anyone says it’s too much for the more advanced in age the British Banking Association(BBA) reported in the Way We Bank Now that there are millions of “Silver Surfers” using mobile and internet banking with nearly 2.3 million people aged between 70 and over 100 years old using internet banking. The study also shows that more than 450,000 customers over 60 are harnessing banking apps on smart phones, iPads and other tablets.
Now the banking industry made these changes so that their customers could more easily use their banking services and keep track of their finances.
There is no doubt that internet use has changed the way many people manage different aspects of their lives. In 2015 the Office for National Statistics said that the internet was accessed every day, or almost every day by 78% of people in Great Britain with online shopping and use of services being the most popular of their use. And that 86% of households in Great Britain had internet access.
So back to health.
You can imagine how delighted I was to hear about the National NHS Patient Online programme and I quickly signed up for the facility to order my monthly repeat prescriptions online which saved me monthly trips to the GP surgery and saved receptionist time receiving paper requests and finding my prescription scripts for me.
From the 31st March 2016 all GP practices across England should be offering online services to their patients which include, ordering repeat prescriptions, booking appointments online, access to summary information (immunisations, allergies, medication) test results and lastly access to detailed coded information held in patients’ records.
This seemed to me to be really good news for people and especially for those, like me, with Long Term Conditions who want to be active in self managing their life whenever possible and if support is needed can do this in partnership with healthcare professionals.
I must confess that I was a bit disappointed when I did get finally get access to the coded information in my records, a few weeks ago, as I didn’t get my past history so I will only have access to future events. Thankfully I still have my own record to rely on and hope that future generations will get this straight away so they will have a chronological record to use.
Who knows about this and how do you get access?
This seems to be a problem in some places where not many patients are aware that online services are available or what this could mean to them personally. If they do know people report that it can be difficult to find out how to do this at their own surgery, as information doesn’t appear to be always readily, or easily, available.
Here are some Frequently Asked Questions for patients from NHS England.
Equally it seems that some GP practices do not yet see the potential of how online services could free up time for them and more importantly enable their patients to be more informed and self-managing partners.
Frequently Asked Questions for GP practices
There has been a lot of publicity nationally in England from the Patient online team and support is available for practices where there are local needs but this isn’t enough as there still appears to be a huge gap between what is ‘technically’ available and what is promoted to patients and made easily available at practice level.
For me personally I can only see benefits and a friend of mine Ingrid Brindle has built up her knowledge over a few years of having full access to her records at the forward thinking Haughton Thornley Medical Centre in Hyde (led by Dr Amir Hannan) Greater Manchester where she is Chair of the Patient Participation Group. Listen to Ingrid talking about her experiences at The Kings Fund in 2014.
If you’re still not sure and want to know more you can watch, and listen to, these short case studies snapshots, which include different views from GPs, practice managers, receptionists and more patients. You can hear again from Ingrid and just below Ingrid is another colleague of mine Trevor Fossey who talks about how useful it is to him and his wife, who he cares for, to have online access to their records.
For me having online access to my records, test results, medications, and prescription ordering isn’t really about gadgets or Information Technology (IT).
It’s about me being responsible and empowered in being as informed as I can be to make decisions about my most valuable asset, my health.
I’m really pleased to be re-blogging this piece written by Shahana Ramsden who is the Senior lead for co-production at the Coalition for Collaborative Care. http://coalitionforcollaborativecare.org.uk
I am member of the co-production group which is made up of a wide range of people with Long Term Conditions(LTCS) and carers of people who have LTCs. The main assets of the group, who all have many skills and expertise, is the passion each individual has to make a difference in health and social care which is the reason that drives me.
I learn something new from each individual every time we meet or work together but must say that I have benefitted the most from Shahana’s lead, direction and diplomacy. Thank you Shahana- it is a pleasure to re-blog your piece on co-production here.
Shahana Ramsden blogs for us today on her 5 ingredients for co-production. She is the Senior Co-Production Lead NHS England and the Coalition for Collaborative Care (Co4CC). Shahana’s 29 year career includes supporting co-production with people who use services and carers and leading equalities programmes. Prior to her role with NHS England and Co4CC, Shahana worked as a Patient and Public Voice Manager for NHS England’s Patient Online programme. Shahana has been recognised by the Health Service Journal as a BME pioneer and was highlighted as one of 100 virtual change activists for Health and Social Care through NHS IQ (The Edge).
Working in Co-production with patients, people who use services and carers can be simultaneously simple and complex. It is messy, not linear. When it works well we have to prepared for a change in culture so that we avoid fitting people into boxes and are prepared to position the organisation…
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This year I’m attending EXPO 2015 as a member of the People’s Panel which is a group of people who are patients or carers and who have lived experience in learning to deal with their own Long Term Conditions or as a carer, and who have also become expert in navigating the sometimes complex world of health and social care.
The fact that the planning for EXPO has included patients and carers is demonstrating the drive and commitment of NHS England and the Five Year Forward View to develop “..a more engaged relationship with patients, carers and citizens so that we can promote wellbeing and prevent ill-health”. https://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf
This new relationship will be exemplified by members of the People’s Panel to show how working together, or coproduction, can happen in practice between patients, carers, and organisations and hopefully usefully bring a ‘reality check’ to the many conversations and debates that will take place over two days.
Working together or true coproduction is not as easy as it sounds in reality. Often I have found myself being used for a consultation or engagement event where I know that nothing I say will change anything and all that is really required by the organisation is an endorsement so that they can ‘tick’ the patient/carer/public engagement box.
That kind of exercise is so short-sighted as no one really gets anything positive from it- the organisation doesn’t get the insight they need to be really effective and for me, as a patient expert, all I’m left with if a feeling of frustration, having had my time and limited energy wasted.
I’m pleased to say my experience with EXPO15 and the Coalition for Collaborative Care, http://coalitionforcollaborativecare.org.uk
where I am a coproduction member, has been positively different. Specifically in the planning of the event:
- Patient/carer views were listened to seriously, discussed and acted upon;
- Proactive advice and suggestions were welcomed;
- Patient/carers were valued as equal members of the planning team.
Equally I have respect for the professionals who have key roles in planning such a high profile, national event with tight deadlines, a zero budget and small team. This is indeed evidence of developing better ways of true partnership and really working together from design to implementation.
It has been said that this year’s EXPO 2015 “..will be challenging, and will deal in reality not theory”. As a person who has Long Term Conditions I deal with the reality of that every day which includes chronic pain, limitations in mobility and lack of stamina on the negative side but also includes positive insight into personal resilience, into health and social care organisations and how simple changes could make big difference to people’s lives.
So I’m really looking forward to taking part in the two days in Manchester, my home city, on 2 and 3 September and particularly working in partnership with other members of the People’s Panel, the Coalition for Collaborative Care and the people I meet.
I’m looking forward to listening, learning and hopefully influencing too so that I can feel I have made a positive difference in the drive to ensure that true partnership working becomes embedded across health and social care so that person centred care can become a reality for everyone.
In other words the ‘get real’ factor – hope it helps.
Have you ever visited your GP or A&E, been in excruciating pain that your doctor agrees is awful and which will definitely get worse without any urgent advice or treatment?
I must confess this has happened to me on numerous occasions as I’ve suffered broken bones, many slipped discs and a ruptured disc in my back – which was definitely off the 1-10 pain scale! – and had me shuffling slowly and painfully with sweat dripping off me until I’d been operated on.
On those and other occasions, which I won’t bore you with, when I suffered physical health problems I found the response of doctors and other healthcare practitioners to be pretty responsive, compassionate and keen to do something about the problem quickly.
But what a shock I had when faced with mental ill health 16 years ago and was diagnosed with severe clinical depression. I had subsequent recurring major episodes that endured for more than ten years. I now know I was ‘lucky’ to even get diagnosed and I have a GP to thank for that, who knew me well. I was also ‘lucky’ in being able to access psychological therapies and ‘only’ having to wait five months for that.
But I wasn’t so lucky in the following years when these episodes reoccurred or I hit crisis points. I discovered that services had been restructured since the last time I’d needed help, so the phone number I’d been given to call had been changed or someone had left.
Trying to navigate NHS structural and administrative changes when you’re feeling very ill is pretty difficult when you’re physically ill, but is almost impossible when mentally unwell.
Recovery for me was a slow and painful process, and I couldn’t have done it without professional help, medication, expert advice, mindfulness meditation and a strong support base of friends.
According to the Mental Health Policy group, who recently launched a Manifesto for Better Mental Health see here
“between 4,000 and 4,500 people take their own lives in England each year”.
Furthermore, “only a third of people with depression get any help, and even fewer get the full range of recommended NICE treatments.”
The report goes on to say that currently, “referrals to mental health services continue to increase. Monthly referrals to community mental health teams were up 13 per cent in 2013, and up 16 per cent for crisis services”. But money for mental health services has fallen in real terms.
I fully support the manifesto and the organisations who have come together to try to exert some influence in the mental health world and really hope that it is an additional lever to get some much needed improvements in mental health across the country.
I find it shocking that in 2014 mental health is treated differently to physical health and that access to the scarce range of treatments available is so poor. When I had broken bones I wasn’t asked to go home and wait for a number of months or years and then go back for treatment.
So why is it OK for someone with a severe mental health problem to be told to do just that?
I’ve never heard of anyone who was suffering from a life threatening physical problem, say a heart attack, who was locked up in police cell for safety because there was no medical help available?
Yet that happens frequently for people who are suicidal and in fact the police are often the only emergency service who offer help – so I’m not knocking them, just pointing out how truly shocking this is.
But what is more shocking to me is that we tolerate this state of affairs, as it has become the norm.
While the Parity of Esteem call to action by NHS England is welcome, I fear it will remain an aspiration that is never realised.
So what needs to be done?
Well, I think a seismic shift is urgently needed in commitment, funding and attitude to make any appreciable change in mental healthcare, which includes research, treatments and interdependencies with physical health.
This shift needs clear leadership at national, regional and local levels spanning government, NHS Commissioners, providers and the third sector.
No huge reviews need doing – just listen to the people who currently work flat-out in NHS mental health services and they will explain what’s needed.
Listen to charities such as Mind and Rethink, who do magnificent work helping people who are left without any access to treatments but have life-changing and life-limiting conditions.
Listen to the people who have lived life experience of mental health problems. Recovery is possible but many people never get the chance to find out.
Any new investment needs to be additional, designated finance and not become a contest for short-changing any other existing area of care.
Tolerating the norm is no longer an option – people’s health, quality of life and futures depend on the shift being made – and made quickly.
For further reading and evidence I recommend the report by the Royal College of Psychiatrists from March 2013- Whole-person care: From rhetoric to reality – Achieving parity between mental and physical health.
I was fortunate to attend the recent NHS Confederation conference and exhibition in Liverpool last week. I felt privileged to be able to see and network with many people from a range of organisations involved in health and social care.
Everyone I met or listened to was keen to share their experiences, and sharing for me was a constant theme throughout the three days.
I always reflect on what I’ve heard, who I meet and write up notes from sessions attended for information to share with my colleagues at http://gmcsu.co.uk.
I thought it might be useful to share more widely what, and who, stood out for me during the three days. I’ve put related links in so that if you weren’t there and are interested you can check them out in your own time.
So here are the ones I’m still thinking about:
This was a really impressive speech, which encouraged everyone to get off the ‘burning platforms’ and embrace a ‘burning ambition’ for changes needed in the future. Rob emphasised the need to support sharing of information and the collaboration of genuine co-commissioning.
2. One patient, different perspectives, many different outcomes: NHS Leadership Academy
I took part in this interactive session, taking on the role of a GP, where enthusiastic participants (who took on other health and social care roles) shared views, and discussed and debated many practical, ethical and real issues of commissioning and providing good health and social care.
Thanks to Helen Stevens, Head of Engagement, from the NHS Leadership Academy and her colleagues for their excellent facilitation of this activity. It brought out many of the complexities of systems leadership and certainly made me think further about integrated care for older people.
3. Dr Patrick Soon-Shiong: Transforming models of care – this time it’s personal
Dr Soon-Shiong is a physician, surgeon, scientist, businessman and philanthropist whose presentation completely blew me away. Firstly, this was for the clinical breakthrough he’s making in cancer diagnosis and personalised treatments using genetics, genomics and cracking the DNA of different cancers.
Secondly, for the work he is doing with NANTHEALTH on an interoperable system, which links data, knowledge, and information in an interactive way. The system can be added to any platform and can accelerate the coordination of health and social care data, and information for patients in real time, and in a cost effective way.
Kate Granger was the last person to speak at the conference and you could have heard a pin drop in the hall as everyone concentrated on what she had to say. Kate is now famous for starting the #hellomynameis campaign to remind healthcare practitioners to introduce themselves to patients. http://hellomynameis.org.uk
She talked about the ‘little things’ that make a big difference to her as a patient and gave examples of the kindness she has received and reflected on her experience.
Kate is actively raising money for the Yorkshire Cancer Centre and has written two books ‘The Other Side’ and ‘The Bright Side’ http://theothersidestory.co.uk
She has raised over £100,000 to date but has £250,000 in her sights before she dies. She plans to jump out of a plane in August to raise further funds.
She is a truly remarkable, compassionate and determined young woman.
These top four speakers demonstrated the art of sharing in different ways that can help to improve and/or change health and social care for the better.
Other people who made an impression on me included:
Helen Bevan, NHS Improving Quality
Lisa Rodrigues, Chief Executive, Sussex Partnership NHS Foundation Trust
Ceinwen Giles, Patient Leader and Trustee, Shine Cancer Support http://www.shinecancersupport.co.uk @ceineken
I’m interested to know if you were at NHS Confederation – what stood out for you and how do you share the work you do?
If you weren’t at the conference I hope you’ve found my thoughts and links interesting. Is there something you would like to share from your experience in health and social care that could benefit others?