Tuesday, 25 February 2020

I have a rare disease - Angiosarcoma

I have a rare disease

That should be I ‘had’ a rare disease as I finished my treatment three years ago and I am still clear of the rare cancer called Angiosarcoma that was found on my back.

I am lucky in that my wife, family and friends were here to support me. But I was also used to life in a hospital as I had worked as a biomedical scientist in a London teaching hospital and as part of my job I used to go to the wards and operating theatres.  I was used to the language & terminology of medicine.

This background of working in healthcare meant that I was not really anxious about the new situation I found myself in in autumn 2016 when I found out that I had cancer.  Yes, I was a bit worried but I was positive that I would be back to doing the things I did before cancer as soon as I could.

I can understand how people get very emotional about getting a diagnosis of cancer and going into this rather alien environment that is a hospital. I spent about ten days on the ward and I used to chat to my fellow patients and some of them were very anxious.  It is scary being on your own, away from family & friends, especially if you were in a specialist centre a long way from your own home as we were.

This sense of isolation that someone with a rare disease feels is one of the important lessons I learnt from my experience. Even on the ward of this specialist hospital we were all in different situations and different stages of our life with disease. Some had been in and out of hospital over several years with complications. All of us had had life changing experiences. (I almost forgot that I was in the same situation as them and typed ‘them’ instead of ‘us’!). 

I found myself observing the activity within the ward, watching the interaction of staff & patients.  I had spent some time working in change management in the NHS & in quality improvement. Here was my opportunity to experience it first-hand. It was an interesting experience being a patient and then as I recovered, an observer.

The thing that made the biggest impression on me was the need for good communications about what was going to happen to us and also the need for emotional & psychological support for both patients & relatives’/carers while we are in hospital & on our return to our home. 

It is a shock being told you have cancer. It is a shock going into hospital. It is a shock going home.  When you have a rare disease, it is an even bigger shock as there isn’t any local knowledge about your condition. Clinicians may only see one example in their working lives and that is you!  You probably know more about it than they do.

By the way I discovered that a friend of 45 years also had the same cancer as I did so perhaps my statement is a bit of a generalisation.

So, these are my thoughts on Rare Disease Day Feb 29th 2020.

Please provide more emotional & psychological support for rare diseases.

Wednesday, 21 March 2018

What is the Buckinghamshire Integrated Care System?

I attended the Buckinghamshire Health and Social Care Integration Summit in November 2017 when the new Integrated Care System was discussed by representatives from the local authorities, health care system, local charities & the voluntary sector and some members of the public (me included). 

Sadly the presentations went over time so there was no time for questions (not good!) but I did send my questions into the organisers.  I have now received the response to those questions.

Of course the name of the new system has been changed in the meantime.  However the purpose of the new system remains the same.  So for Accountable Care System (ACS) please read Integrated Care System (ICS).

Q1. Is there any extra funding for Buckinghamshire ACS to invest in Public Health & community services?

Answer: NHS England is offering Accountable Care System (ACS) transformation money to support us to meet our priorities and go further, faster. Opportunities to bid for further funds do often arise.
In addition to monies that may be made available through the ACS, we are investing £1 million in community services, bringing together nurses, therapists, social workers, GPs and other relevant organisations to provide 24/7 cover for people who need the greatest health and care support and give them better, more coordinated care in their homes. 

Q2. ‘Accountable’ to whom? How can the public hold this new organisation, which most know nothing & were not consulted on, to account?

Answer: The ACS is not a new organisation, it’s about further developing our system way of working, which supports:
       Joined up working between health and social care services to provide better care and help people to stay healthier
       Staff to work together easier across our provider and commissioner organisations
       More local control and freedom to make decisions
       Extra support to go further and faster in improving services
It will allow us to have stronger local relationships and partnership work based on common understanding of local priorities, challenges and next steps.

Q3. How will the public know that the ACS has achieved its purpose, indeed what is its purpose?  What baseline measures do you have for outcomes, organisational, financial and patient outcomes, so we can compare the improved public health & other outcomes in the future?

Answer: The purpose of our system working is to achieve our vision for “One Buckinghamshire, one integrated health and care system”, by further developing our community-focused approach to integrating services and collaborative working across the county. 
We have a track record of success on working collaboratively to improve quality, transform service models and build financial sustainability. Some of our successful working to date includes:
A system wide Primary Care Strategy,  agreed in 2015 and with strong clinical leadership across primary care that has seen the development of a nationally recognised innovative alternative, the Quality and Outcomes Framework, with outcomes that build a ‘fit for purpose’ future primary care service. This has established a care and support planning approach in primary care resulting in Buckinghamshire being the best for diabetic glucose control in the country.
A Buckinghamshire Provider Alliance agreed between FedBucks, Oxford Health NHS Foundation Trust and Buckinghamshire Healthcare NHS Trust, with a commitment to integrate seamless services for patients;
Care Closer to Home – Integrated Adult Community Healthcare teams have provided 24/7 services since 2012. Locality led initiatives include the introduction of the Airedale model remotely supporting care homes and enhanced primary care teams supporting frail elderly people developed from our system work on Multi Agency Groups;
We are piloting the development of Community Hubs including increased community based services, short term packages and a new frailty assessment service, reducing the use of overnight community beds;
A collective approach to engagement – with a single communications and engagement team across Buckinghamshire County Council and the Clinical Commissioning Groups working closely with colleagues in provider trusts.

Q4. One example of an ACS in Canterbury in New Zealand. This has taken ten years to achieve its aims and required extra funding for public health, community services & social care.  We do not have the luxury of time not it seems any investment.  We need improvements now to maintain the quality of care services & to improve outcomes. Can this ACS do in a short time what took Canterbury 10 years to achieve & without extra funding?

Answer: We do recognise that like Canterbury, we are not going to be able to achieve what we want overnight. Some work streams will take longer than others. However in the meantime we are equipping ourselves with the lessons learnt from the Canterbury project, as we have been able to meet with them and apply this where appropriate to our work.   We have also set ourselves some priorities to deliver for 2017/18, which include:
       Providing more joined-up care closer to home, through community hubs and integrated teams working with groups of GPs, tailoring care to the needs of their local communities.
       Making it easier for people to get urgent care when they need it, including out of hours.
       Improving and simplifying care for diabetes and musculoskeletal problems.
       Improving and increasing access to mental health services, including for children and young people.
       Improving the prevention, diagnosis and treatment of cancer.

Q5. How will the Bucks ACS improve retention and recruitment of staff? What is the effect of the ACS on the working conditions of staff, on their Terms and Conditions, GP surgery & Pharmacy contracts etc.?

Answer: Staff will continue to be employed by the organisation they currently work for and as such there will be no changes to their terms and conditions or contracts as a result of Buckinghamshire becoming an ACS.
We hope that being an ACS will help to improve retention and recruitment of staff in a number of ways.  By working closer together across the system it will make it easier to make sure we’ve got the right people in the right place at the right time. Job satisfaction will increase as together we will be able to provide better care in the community, at home or in hospital, helping people to stay healthier.  There will also be greater career development opportunities for our people, as they will have the opportunity to work in integrated teams or rotate across different health and care settings. As one of the first ACS we believe the opportunity to get involved in something that is exciting and innovative will also be an attractive prospect for some.

Q6. What will be done to improve access to Primary Care Services & GP services, especially in places like High Wycombe and the rural parts of Buckinghamshire?

Answer: Improving access to primary care services and GP services is central to NHS England’s Five Year Forward View (FYFV) and General Practice Forward View (GPFV) and so is a key part of much of the work at Aylesbury Vale and Chiltern CCGs.  We also have a number of work streams in place specifically designed to ensure the population of Buckinghamshire have timely access to appropriate primary medical services. This work is being done in the context of the development of an ACS for Buckinghamshire which encourages partnership working across the whole health and social care system and whose benefits are already positively impacting on improved access for primary care services.
NHS England launched the General Practice Resilience Programme (GPRP) as part of the GPFV, which is designed to secure sustainability of GP surgeries by tackling many of the issues that are creating pressures on general practice and threatening the viability of practices. A key part of the GPRP in Buckinghamshire is to encourage practices to work together in clusters on a range of projects which improve access to primary care services, for example, developing integrated teams with a focus on integration with other primary care professionals (nurses, pharmacists) or improved working with the voluntary sector, addressing the needs of high intensity users of primary care, out of hours services and A&E by better working with social services. We now have thirteen such clusters beginning to form local plans across Bucks.
In addition, GPRP funding is being used to train care navigators in general practice. Care navigators provide front of house signposting of patients to ensure they receive the right care from the right healthcare professional, or alternatively are able to access social care or services from the voluntary sector.
Many practices are also using or developing alternative methods for patients to access primary medical services such as on-line booking of appointments, Skype and telephone consultations.
So that access to primary care services in and out of hours is seamless for patients, we are also in the process of commissioning extended access into primary care services whereby patients will be able to book an appointment with a healthcare professional 8am to 8pm Monday to Friday.  We will also be looking at whether we need to commission this type of service at the weekend (although experience from elsewhere suggests that routine appointments for primary care services at the weekend are poorly utilised).  We anticipate that 100% of the Buckinghamshire population will be covered by this new service by March 2019.
The extent of the work means that all residents of Buckinghamshire should see an improvement in access to primary care services whether they live in a town or rural area. A key part of cluster working is for practices to understand and plan for the needs of their local area, including how different groups access services. As the CCGs develop working as part of the ACS this locality focus will widen out to other health and social care providers to create an integrated care system with timely and appropriate access at its heart.

Q7. Buckinghamshire has already squeezed the local health economy and has, just about managed its finances but there are now signs of stress in that a deficit is forecast for this year.  Is the ACS really just a means to balance the books rather than improve quality of care? Buckinghamshire has already made many changes to remain within the financial targets so what other changes can be made in the way that hospitals deliver acute care more efficiently?

Answer: Becoming an ACS is certainly not just a means to balance the books although we are hoping that by working better together we can find ways of delivering higher standards of care more cost efficiently.  For Buckinghamshire Healthcare NHS Trust, being part of an ACS is about how we can work with our partners in the system to ensure the residents of Buckinghamshire stay healthier for longer - now and in the future. Research shows that it is in the best interests of patients to stay at home and receive treatment locally. We are working as a system to achieve this, ensuring that acute care is there for those that really need it and that all patients are seen at the right time, in the right place, first time.   We believe greater transparency and openness between organisations – working towards a common goal – means that we would reduce duplication and stop moving money around the system, instead focussing on where the greatest support and investment is required.

Q8. There is a mismatch between what senior managers/civil servants NHSE say and the views of those providing and reviewing care on the wards, in outpatients & GP surgeries!  We need to bridge that gap – what is being done to do so?
Answer: We take the views of our staff extremely seriously and hold regular informal and formal feedback sessions to understand any issues or to hear suggestions for how we can improve things.
We know that our staff have the solutions and so an important principle for our ACS is for there to be strong clinical and staff leadership, and that we actively involve and engage our patients and communities to co-design future services.

Saturday, 24 December 2016

The Workforce - the sixth priority

In reality the Sustainability & Transformation Plans (STP) are all about reducing costs and in the NHS the cost of the wonderful staff is the biggest part of the overall cost to providing care.  So any good planners will be taking a close look at staffing costs and performance.

Prioity 6 for Buckinghamshires STP is:

"Establish a flexible and collaborative approach to workforce."

Their initiative is:

"A shared workforce plan to support rotation of staff across organisations to increase quality of care and staff retention."

Motherhood and apple pie! The NHS locally has been talking about improving retention of staff for years yet it is still a problem. Staff morale is low. Staff select to wok in some areas and avoid others. Much of the care is provided by locum staff rather than permanent staff.

In Buckinghamshire we have been short of A&E consultants for many years. GPs and Practice nurses, District Nurses and other specialities are also Report vacancies.

So there suggestion is to share staff across different trusts. But as the nurse taking my Blood Pressure on her evening ward round said: "Every trust is in the same situation. Every day I get asked by an agency to work for more money"

We need more permanent staff!

We need to have enough staff to cover illness, holidays, training etc.

There have rumours that across the STP, that is in Bucks, Oxfordshire & West Berks, £34m is to cut from staff budgets. This figure is in the published document but they do not explain how this will be achieved. As I type this on Christmas Eve they are trying to move an experienced nurse from my ward to one that does not a enough staff. This is dangerous. I do not know the outcome of the discussion.

This is the reality of 21st century hospitals across the country.

I do not think that this priority has a viable solution yet.