Changes within the NHS and care systems and in the accompanying technology are challenging everyone. I am impressed by the way teams of health and care professionals are largely taking this in their stride as well as maintaining positive attitudes towards their work and empathy for patients.
Our next open meeting for all Charter patients and their carers has been arranged for September 29 th , on the topic of cancer screening. Please do what you can to publicise this event – see poster on final page of newsletter. With only four chances each year to meet and share ideas face-to-face it is really important to have a good turnout. Also, our speakers give their time willingly, usually at the end of a working day, so it is more encouraging when attendance is good and the discussion lively and open. There will be the usual break for refreshments combined with an opportunity to talk informally with others.
As Charter patients we can attend key events in Brighton and Hove and pass on our views to decision-making bodies. In this edition of the newsletter are reports of two CCG meetings attended by Charter patients: one about supporting people living with dementia and the other about public involvement in commissioning decisions.
One direct way of making your voice heard with questions and concerns is through Healthwatch Brighton and Hove.
This can be done quickly through their helpline, 01273 234040 (open 10.00 –
12.00, Mondays to Fridays).
This edition of our newsletter is only possible because Maureen Smalldridge offered to take over as editor on a temporary basis. I would like to thank
Maureen for producing this lively update about Charter Patient Group activities.
We want to encourage Charter patients to write articles for the newsletter and Bob
Potter has set the ball rolling with his account of how he has lived actively for many years with Type 2 diabetes.
You are welcome to join in any of our activities, a few of which are reported in this edition. Please do think of joining our small core of active PPG members to help us to plan more varied activities. Let the editor know how you would be able to be involved .
Anyone free on Mondays between 1pm and 2.30pm, please join in the Healthwalk in St. Ann’s Well Gardens, starting from the Garden Cafe.
Clare Tikly, Chair
Charter PG open meetings:
Our next Charter PG meeting on Monday
29 th September will be on the topic of
Cancer Screening . The speaker will be
Susie Bennett from the Cancer Prevention
Team at the Sussex Community NHS
Trust. Her role is to give talks, workshops

and training around Brighton & Hove on cancer prevention, early detection and signs and symptoms. She wilI also talk about breast, bowel and cervical cancer screenings and the effect of the lifestyle choices we make.
Cancer can be a difficult subject to talk about but Susie ’s team aim to encourage people to be more aware of symptoms and the early recognition of these symptoms which can be key to successful treatment.
World Mental Health Day is observed on
10 October every year, with the overall objective of raising awareness of mental health issues around the world and mobilizing efforts in support of mental health. The Day provides an opportunity for all stakeholders working on mental health issues to talk about their work, and what more needs to be done to make mental health care a reality for people worldwide. The focus of the World Health
Organization in 2014 will be living a healthy life with schizophrenia.
We will be focussing on Mental Health at the following PG meeting which will be on
1 st December when Kevin Rozario-
Johnson from Brighton and Hove
Wellbeing Service will join us to give an overview of the service they provide. The service is aimed at adults who are struggling with normal life events such as job loss or family problems and getting them “back on track”. Christmas will soon be with us and this can be a stressful time for many people. Come and find out where you can get support and share a mince pie with us.
Both meetings will be at Charter
Medical Centre from 6.45 to 8.15 p.m.
We will also be holding an open evening on 24 th November for young people who would like to know how to access help for emotional wellbeing .
Sara Callarman from the Speak Your Mind Young Peoples
Advocacy Project (part of MIND in
Brighton and Hove) will be at the surgery to provide advice. If you are not sure if this is for you, you can contact Sara by phoning or texting her mobile
07818860672. Otherwise just turn up at
6.45pm. You could find out about supportive groups and fun activities around Brighton and Hove.
Did you know that you can find news about Charter Medical Centre Patient
Group meetings and other useful information regarding the practice and healthcare in our area by 'liking' us on
Facebook? All you need to do is set up a
Facebook account on your phone, pc or tablet (if you don’t already have one) and then type 'Charter Medical Centre Patient
Group - PPG' into the search box. Once you have found us then simply click on the
' like' button to follow what is happening in the group!
Helen Phillips
Unfortunately our Newsletter editor has had to stop her great work due to other commitments. Hopefully it will not be too obvious that I don’t have any professional background in editing - I am pasting articles into a template and hoping for the best!
Is there anyone out there with experience or willingness to become our newsletter editor? If so, please contact me through the Chair at claretikly@gmail.com
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As the Chair said, we are always on the lookout for articles from patients and the following from Bob Potter fits well into the self-help ethos that the Patient Group is trying to promote.
For best outcomes, patients and doctors must
‘work as a team’ --– a personal story/opinion.
A little more than 40 years ago, as a 33-year old male, with wife and two children (aged four and two years), I was increasingly aware my family
(and friends) were showing concern regarding my
‘run down’ appearance; I had lost lots of weight, in spite of an insatiable appetite (always healthy food – my wife, as ‘nurse teacher’ was well trained in dietary matters), along with a glass or two of Guinness most days of the week. I assured everyone (and believed!) it was ‘healthy to be skinny’, but did feel in need of a break, so we booked a short holiday in Malta
Only on that first night in the Mediterranean hotel, did I fully appreciate the cause of such anxiety amongst my acquaintances, when entering the bathroom for a shower, I stood naked in front of a full-length mirror (at home I saw only my head and shoulders); the image looking back at me resembled photos we used to see following the end of WW2, of liberated prisoners from Belsen concentration camp -- a skeleton, covered by a thin layer of skin stretched over it. This after several months of eating enormous meals, often arising some nights at 2.00 am, to cook an additional meal to satisfy my ravenous hunger. I was suddenly very frightened
… convinced I probably had a cancer.
The practice wasn’t the Charter Medical Centre in those days – but I was already a patient of Dr J
Murdoch (whom many of you will remember!); a quick urine test identified my ‘problem’ -- not cancer but what today is labelled ‘type 2’ diabetes
[in the 1970s it was ‘Maturity Onset Diabetes’, later ‘Insulin Dependent Diabetes’, now ‘type 2’ --
I suspect the label (for my version) soon to be again modified]. This is just the beginning of the story, of course; forty years ago diabetes wasn’t the ‘big issue’ it is today (probably, for two reasons: forty years ago, the condition wasn’t so readily identified, secondly, for many (most?) patients the onset of ‘type 2’ is associated with
today’s obesity).
Most aspects of diabetic care have changed immensely during the last fifty years. A few days after my diagnosis, I was visited at my home by
Brighton’s ‘soon to retire’ diabetic consultant, Dr
John Wagstaff, who took some blood and gave me an appointment to see him at the County outpatients department; so began the endless routine of regular visits to the hospital diabetic clinic.
My regular trips to the diabetic clinics coincided with the arrival of Dr Joanna Sheldon as the new diabetic consultant, and what a privilege it was to become one of her patients … for the next eleven years. Joanna (who encouraged being addressed by her first name) was determined to virtually
‘force’ patients to realize their successful treatment often depended upon them being
actively involved in understanding and managing their condition, in parallel with their doctors. In my case, she was to emphasize, that meant 24 hours a day, every day for the rest of my life. Most weeks she held informal ‘patient meetings’ -- in
her own time, she mentioned, in passing, in one of her letters to me! – meetings open to any patient; in discussion she would be happy to chat about any aspect of diabetes, including on-going research (some of her own research on ‘insulin immunology’ is on the internet). She encouraged all to ‘get into the habit’ of regularly looking at medical journals (following her advice, I became a regular visitor to the Post Graduate Medical
Centre library, then at Brighton General Hospital, especially to read the American journals that often ‘anticipated’ what subsequently appeared in the UK).
Following initial diagnosis, I was placed on a strict low-carbohydrate diet, together with some tablets. Life was agony, but, being a coward, I was even more frightened by the possibility of needing daily injections, so I struggled on – until seeing
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Joanna, early in January 1974; it was a very brief appointment – she organized my admittance as an inpatient, to be stabilized on insulin, that same day. Just 48 hours later, on insulin injections, my injection ‘fears’ had vanished …. And I’ve never looked back!
In the 1970s, the ‘needles’ weren’t the comfortable little plastic syringes we have today, and since then, home monitoring has become much easier with the ‘blood monitoring’ kits insulin-dependent diabetics all have at home.
I’ve experienced a large variety of insulins, and after 40 years of jabbing myself four times a day, it’s very unusual to ‘have a problem’.
Savage funding cuts left me increasingly unhappy regarding my occasional hospital clinics; certainly I never found a doctor/patient rapport to match the one experienced with Joanna (who tragically died, suddenly, in 1985). [I often think of her still, when I give myself a jab or endeavour to ‘keep up to date’ with latest research development in the diabetic and closely related fields]; my reasonable
‘fitness’ (at 82 years) and good diabetic control is largely a consequence of Joanna’s inspiration. I chose to stop attending the hospital clinic … instead, very happy with the on-going care received from the GPs at our Charter Medical
Centre.
I would urge ALL patients (NOT just diabetics!) to strive to learn as much as they can about their condition and related current research. I am
NOT at all advocating patients should be ‘telling’ doctors how to ‘do their job’; obviously reading a few journal articles can never be a substitute for years of training in medical schools and their everyday clinical practice, but by learning as much as one can about their condition enables the patient to ask meaningful questions of their
GP or other members of staff. The more the patient knows, the better able is the doctor to give appropriate advice …. Surely, it’s just plain
common sense?! Bob Potter
In July, Nora Mzaoui and I attended the
Clinical Commissioning Group (CCG)
Strategy meeting.
The theme was “How can we ensure effective patient and public participation so as to achieve meaningful improvements to Health Service provision in Brighton and Hove?”
Nora led a group discussing strengthening
PPG voice and influence (notes from Nora follow) while I browsed the other groups to see what people were saying about such topics as social media networking, communication and contact, and clarity and accessibility in engaging action.
Unfortunately, a lot of the discussion was narrower than the brief, with some people talking about their specific issues, but some useful things emerged that the PPG committee can think about:
Firstly, a non-technical way of getting people in GP surgeries to give feedback could be post-it notes and a board. Plus we could use positive press releases
Secondly, for those with internet access, regarding social media, the Facebook growing age is 55-65 so we can use it to inform a much wider age range than we had envisaged.
The CCG has a U-Tube video channel called “What’s up Doc? Search at http://www.brightonandhoveccg.nhs.uk
They plan to produce a PPG video.
The Kings Fund has “An alternative guide to the urgent and emergency care system in England” on its website www.kingsfund.org.uk
. Go into Youtube on the site.
Latest TV Brighton (which has now just launched) asks for information from the community and apparently it is easy to produce a video and post it.
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Is there anyone with the technical skills to do something like post a video? Or any other ideas for ways for patients to be involved in what the CCG is commissioning?
We will be attending another meeting in mid-September where the CCG will talk about their problems in commissioning healthcare in Brighton and Hove, so if you have any feedback or issues we could raise, please let me know.
The CCG hope to publish their strategy document in October and use the PPG
Network group to prioritise what PPG’s should do for the Action Plan.
Maureen Smalldridge
The event was attended by approximately
20 PPG members and some participants from the public.
After identifying various topics I led a small discussion group of participants on the topic ‘Strengthening Patient
Participation Group (PPG) voice and influence’
The small group felt really passionate about this topic having noticed the lack of influence PPGs have both on PPG/GP level and on strategic level i.e. with the
CCG.
Three important points came out of this discussion:
*More opportunities for PPG members to be actively involved in decision-making around commissioning activities and priorities.
*Strengthening individual PPG participation around primary care as well as collectively around commissioning
Social Care and Primary Care.
*More effort to improve the use of social media especially with a view to getting more young people involved.
Nora Mzaoui
Dementia Action Plan Workshop, July
2014
Dementia awareness and integrated support is a high priority for the Clinical
Commissioning Group and the City
Council. It is estimated that 2% of the population of Brighton and Hove are living with at least one form of dementia. This was a well-attended workshop and included at least two Charter patients. We took part in discussion groups led by experienced health and social care professionals. Here is a brief summary of some outcomes from the discussions.
The recognition and needs of carers should be central to all sections of the action plan. There should be regular communication with GPs, information about facilities and support available through community organisations, and access to a ‘champion’ for each dementia patient. This support for patients and their carers is strong where there is informed public awareness and training about forms of dementia, and how people can best live with their conditions. Early recognition, in an atmosphere free from stigma and prejudice, helps identify patients’ individual needs. All this, and more, is part of being a ‘dementia friendly community’, as defined by the World Health
Organisation.
One discussion group focussed on housing, in both the public and private sectors. An awareness of people with complex needs that may include progressive dementia requires skilful allocation of housing to enable patients to remain as independent as possible for as long as possible. Growing needs are best identified through close contact between patients and carers, care home and day care professionals, and members of the public who are sufficiently aware and
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concerned to seek support when they notice particular needs.
Brighton and Hove have had some notable achievements already, including the Active Memory Centre, more effective planning for discharge from hospital for those whose need support for symptoms of dementia, and the Butterfly Scheme in hospital. On the morning of Thursday,
25th September I will be going to the launch of a pack giving information and activities for carers and community support groups to use with dementia patients. This has been developed and trialled by the Trust for Developing
Communities. It would be great if some other Charter patients could come along as well. We could perhaps set up a support group within the PPG. Please contact me for further details through claretikly@gmail.com
Clare Tikly
We have agreed with the Practice that a room will be made available for a member of the PPG committee to listen to any comments about Healthcare in Brighton &
Hove that patients would like to be passed on to those commissioning the services.
This will be on an experimental basis for one hour on the first Friday each month until Christmas, when it will be reviewed.
The first session will be Friday, October
3 rd . Keep an eye on the website for any further details re times.
The installation date for the new telephone system is 7th October. This should significantly improve the service.
The flu season will soon be upon us. The practice has ordered vaccines and hopes to start flu clinics in September, but this will depend on the vaccines arriving.
Shingles vaccination catch-up will also be taking place. Please keep an eye on the website for details.
Regarding the website, there will be a new design coming soon, although the exact date is unknown. When it changes the
PPG web pages may also change.
When you give the surgery an e-mail address to record on your medical record, please look out for a “verification e-mail” which will confirm that the surgery has the correct address if you click on the link and answer the security questions.
Stop press - at present the PG cannot post to its’ web pages because of the changes the practice is effecting. Please pass details of the upcoming meetings to friends who may not be signed up to receive our e-mails.
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