Word of Mouth Blog

Welcome to Healthwatch Cornwall’s guest blog.

Each month a guest blogger will share their views on a health and social care topic relevant to Cornwall.

It’s an opportunity to read their opinions on services they support or topics they are passionate about.

If you would like to take part please email spencer.woods@healthwatchcornwall.co.uk with an article of approx. 450 words. Your article will be used at the editorial discretion of Healthwatch Cornwall.

(Please note that the views shared via this blog are not necessarily endorsed or supported by Healthwatch Cornwall).

February 2017

Our guest blogger for February is Jane Action, an ethnobotanist and director of Nature Workshops talking about the benefits to health of nature.

janeactonIn 2013 the NHS bill for antidepressants topped £50 million – we need ‘nature’ on the drop down screen options GPs can choose from.

It might be being where air is being made, using our bodies the way they evolved to be used, sitting round a fire eating, making a den we can come back to, using tools and seeing for ourselves how the world works but what we know is that spending immersive time in natural spaces improves self esteem and feelings of optimism for the future.

The transformation and sustainability agenda might be used to change the role between patients and practitioners via co-production and an asset-based approach. We need to acknowledge we must move from ‘we know best’ to a ‘single whole system living well network alliance’. If we did this prescriptions for ‘nature’ would be easier for GP s to write.

Nature Workshops offers free training for people in work, with one attendee saying, “I lived for after work and the weekends and never thought I could find a job I enjoyed and away from a computer.”

NHS principles can, in my opinion, best be delivered by social enterprises and commissioners can have confidence in standards from agencies with the Social Enterprise Mark such as us.

Randomised control trials are planned, our published research, and others, have shown the benefits. Here is some context from Dr. Alan Kellas and the 10 steps to connecting with nature:

  1. switch off : technology
  2. connect : opening my senses, allowing a wide angle of vision, listen to all the sounds around
  3. focus both big (the stars) and small (snail’s view).
  4. centre: posture, balance gravity forward, back and side to side, giving attention to breath
  5. wander: shifting attention from sensing to moving, treading tenderly as a ‘fox walk’….allowing oneself to get lost, letting go of direction
  6. settle: finding sit spot, find your place, a magic spot to sit or stand or rest in
  7. commune: exchange, listen, watch – as if in a conversation, or a dialogue
  8. ceremony: marking the moment, make a symbolic act, place a stone, notice something has passed, something is beginning, allow deep creative imaginings – an image or phrase or feeling arise may come or emerge
  9. welcome the darkness: not running away from fears, being still, there is discomfort…things do come to an end, even die….bring forth: there is a present in the present, a gift or offering, a realisation
  10. give thanks: on returning, gratitude…it leaves no room for worry.

To find out more about how being in nature could benefit you, call Jane on 01209 215211 or visit natureworkshops.co.uk

January 2017

This month we hear from communications officer at Healthwatch Cornwall Josie Purcell about the start of the STP public engagement.

jpsmall2017 didn’t start the way I hoped it would. We had to rush our dog to the emergency vet – he’s pretty poorly. Foolishly, I never got round to sorting out his insurance. But as I would for any family member, I will do my best to keep him well and happy. So far the bill has come in at approx. £1,000. At some point soon I may not be able to find the money for any major vet bill.

This situation reinforced how important it is that we have a “free” NHS and can, on the whole, access healthcare when we need to. There are flaws in the NHS system but I can only imagine what it is like not to have this valuable service. Cornwall, as the rest of England, is currently being asked to shape its health and social care future through its Sustainability and Transformation Plan (STP).

These are mandated by NHS England as a means to “make common-sense changes to how the NHS works” and, of course, deal with financial constraints. On Jan 9 the local public engagement events began for people to have their say on the proposals contained within the county’s draft STP outline business case.

Feedback hasn’t been great, with the event in Penzance described on social media as a “fiasco”. One of our volunteers was there and although he found a discussion away from the main area fruitful, he relayed that perhaps issues with acoustics, event layout and management and some disruption from passionate attendees who perhaps had a fixed agenda, possibly due to previous experience, curtailed proactive discussions in the main room.

Comments have also indicated that the current draft outline business case survey is too vague and more meat is needed on the bones of potential change. Within the draft STP plan there are suggestions towards closing community hospitals, streamlining urgent care services, out-of-hours and 111 and more. That’s why we need to have clear conversations, with continual reassurance that the full picture is being shared by the service commissioners. This is a vastly complex situation and we are stuck with it. Therefore, we need to grab every opportunity to speak up but we need to do so in a way that ensures the commissioners clearly hear what we are saying.

Support of the NHS seems hardwired into the population’s psyche as a general rule. And given my recent experience of having to pay out a large sum of money for two consultations, an ECG and tablets from the vets, it is totally understandable that people want to protect it. With concerns over NHS privatisation and lack of government funding leading to service cuts, it seems natural that when changes have to be made scepticism is rife. Although society has changed since 1948, and will continue to do, surely it does not mean we are incapable of adapting while still protecting services and jobs. For this to happen, we must talk.

Whatever your view, make sure you comment now as the draft outline business plan states, consultation on “any major service changes” will begin from the summer. Even if you are sceptical of the whole process your input now could influence what those changes might be.

You can keep up-to-date with the STP on our STP page where you can also find links to the feedback survey.

Get Involved – Stay Involved.

December 2016

samThis month, research and evidence officer Sam Gillick at Healthwatch Cornwall talks about his interpretation of the challenge in making STP discussions at national level relevant for Cornwall.

“At the end of last month, I travelled to London for Healthwatch England’s day-long conference, “Putting People at the Heart of STP”. I went because the conference provided a rare and potentially valuable opportunity to learn from other local Healthwatch and those working in health and social care around the country.

I need to quickly point out that STP stands for Sustainability and Transformation Plan. The actual meaning of this jargon is about planning for the next five years to improve health and social care services and saving money in a new way to what has gone before.

The NHS and Cornwall Council are working together to create this plan. A draft plan is out for consultation at the moment. Healthwatch Cornwall has a rather helpful web page keeping track of the latest developments at healthwatchcornwall.co.uk/cornwalls-sustainability-and-transformation-plan/ where you can find out full details of how to take part.

Despite talking to many colleagues from across England and learning a lot in those discussions, unfortunately I came back from London disappointed at an opportunity wasted. I felt that a number of vocal delegates used the platform to hold the “big-wigs” and directors at the conference to account rather than looking for insight that they could take back to their local areas.

Holding decision-makers to account is not a bad thing. Maybe you agree with those vocal delegates but I will give you a scenario and a choice.

Your parent has recently been to the emergency department at Treliske and had to wait for hours on a trolley in the corridor with very little communication from staff about what is going on. You then get a five minute opportunity to speak to the manager of the department. Do you:

  1. Spend the whole time detailing everything that went wrong from the time your parent left their house in the hope that the information will shock the manager into changing things; or
  2. Quickly identify that your biggest concern is the lack of information during the wait and ask the best way to get information for the next time your parent has to go to hospital, potentially suggesting that this way should be made clear to all patients?

The above shows both ends of a scale from shock tactics to soft questioning – on the whole at the STP event delegates went more for A than for B when asking questions of the key note and panel speakers.

Personally, I would probably choose option B and would have acted in that way at the conference if allowed to ask a question. I’m not bitter, I promise… I did however have a productive workshop style discussion around my table in the afternoon about the challenge of engaging with people about something as dry and potentially hard to understand as the STP. We talked about how much effort must be put in to reaching out to those who may not choose to get involved at all.

Healthwatch Cornwall will be looking at its role in providing a voice for the public in the STP consultation over the coming weeks and months but for now, I urge you to simply Have Your Say with us at healthwatchcornwall.co.uk/have-your-say/ and the decision-makers via cornwall.gov.uk/shapethefuture.

Whether you would choose option A or B, it’s that you get involved that matters.

 

November 2016

IMG_0042Diane Spiers – As outreach and engagement officers for Healthwatch Cornwall, we have to reflect on how, why and where we spend our time. This helps us to ensure we provide a service that is accessible by, and beneficial to, many communities, while also offering a service that is value for money.

A while back, a former outreach officer met Jan Pearce at a public event while promoting Healthwatch Cornwall. Jan was setting up a support group, with activities, for a little known illness called Multiple System Atrophy (MSA). She contacted us some months after that initial conversation to ask if we would go along to share what we do with her group.

We have attended two meetings so far; one in June in Liskeard with 20 patients and carers who were keen to tell their story, raise our awareness of their issues, and feedback their health and social care service experience and a slightly quieter October Carnon Downs session, attended by two patients with their carers and a lady whose husband had passed away from the disease two years ago but who was still processing her loss and the whole traumatic MSA experience.

What struck both me and my fellow outreach officer Jo Smith was the sense of aloneness and isolation patients and families can feel. MSA, it transpires, is so little known even among healthcare professionals that patients and families can easily feel unsupported, frustrated, and out in the wilderness.

At both meetings the frequency of, and time wasted by, non-diagnoses or mis-diagnoses resulting from this lack of awareness was immediately apparent. The value of having even one person with whom to share your experiences or who may be able to recognise the signs and point you in the right direction when dealing with confusing but undeniable symptoms becomes immeasurable.

And from small acorns do large oak trees grow. As Jan explains below, later sufferers dealing with the practical limitations and mobility challenges, as well as the incumbent exhaustion from dealing with these challenges, means they cannot or do not always get to meetings, but the idea of the MSA support group not being there would be a great loss to them.

The MSA awareness voice in Cornwall is presently quite faint but we hope we can help amplify it and help it grow by spreading the word and letting people know how you can find out more. That makes what we do worth doing and of benefit to a number of people.

Jan Pearce – MSA is an illness that few people have heard of, with most only learning about it when they or a friend or family member is diagnosed with it.  It is a progressive illness with no cure, though much research is being done to understand the condition and hopefully one day find a cure.  It shows itself in various ways, and symptoms include shakiness (like Parkinsons), loss of balance, difficulty in walking, writing becoming smaller and the voice becoming fainter.  There is also difficulty in swallowing and bouts of hypotension as the illness progresses.

Each patient experiences their illness differently.  The dear friend that I knew was always very active so was aware in the early days he was unwell.  He was bounced around the NHS for about five years with medics suggesting what or what not may be wrong with him, and sadly it was only two weeks before he died that his MSA diagnosis finally came. He was admitted to hospital with hypotension.  With the benefit of hindsight he need not have endured the operation that attempted to open up the muscles in his throat, and wasting his shortened life in subsequent convalescence, as for someone with MSA this procedure was never going to work anyway.

Diagnosis is difficult, some being diagnosed with Parkinsons in the early stages, and because of the rareness even people in the NHS have no knowledge of the illness, let alone know how to help the patients who present to them with such debilitating symptoms.

The MSA Support Group in Cornwall goes back 10 years, being only the third to set up in the UK. There was a break in meetings before starting up again, with the support of the MSA Trust and Specialist Nurse Jill Lyons, two years ago.  Finding a suitable location for a meeting place is difficult as some patients intend to come along but are too ill on the day, or they are unable to make a long.  We have been using two locations, Liskeard and Truro, but meeting three times a year on alternating venues brings its own challenges.

One of our regular attendees is Julia who is MSA diagnosed and lives in the Falmouth/Helston area.  She said: “I feel that specialists should have a more positive approach to their patients and attend updates so they can give them a helping hand to get information.

“They should also have a more caring attitude instead of thinking “there is nothing I can do for you, here is the website, good bye”.”

We are hoping that by raising awareness both inside and outside the health service, the 16 MSA diagnosed patients in Cornwall will receive the help and support they really need.  Among them there are 34 truly dedicated husbands, wives, carers and other friends (who are MSA Trust members) who do their best to help those they care about.

More information is available from the MSA Trust website: msatrust.org.uk or by contacting Jan at moonbeams@ymail.com or on 01726 861361.