Neurological Alliance Patient Experience Survey

About the patient experience survey 2018–2019

The Neurological Alliance is currently undertaking its third biennial patient experience survey.  This survey is unique in gathering the views of people with neurological conditions across England, asking about their experience of health and care services across the country. It enables the Neurological Alliance to understand what’s good, and what’s poor, in people’s experience of local services. As with its previous surveys, the Neurological Alliance will use the results to campaign for improvements to these services. It plans to publish a report of its findings and recommendations in summer 2019. 

To access the survey, please click HERE

The survey is live online from 17 October 2018 to 22 March 2019. It may take around 20 minutes to complete. Survey responses are completely confidential, and information about this is provided at the start of the survey.

On-Going Campaigns

1.  Medway Neurological Hub

➢ A one-stop centre for all with neurological conditions, to include: Neurologists/ GPs/ Nurses, neuro-trained for assessment/ referral/ signposting 
 ➢ Treatments, e.g. neuro-physiotherapy, speech therapy, counselling, integrated personal care plan services, dietary advice etc. 
 ➢ Therapies, e.g. Pilates, Exercise, Singing, possibly hydro-therapy 
 ➢ Neurological charities to provide information & support 
 ➢ Could be incorporated into Medway Model.  

A summary of the Medway Neurological Network (MNN) Neuro-Hub proposal can be viewed HERE.

This proposal chimes with the MCCG policy of using hubs in the Medway Model and also chimes with the need to reduce out-patient care at Medway Maritime Hospital in order to free-up parking for the new Urgent Care Centre.

The Medway Clinical Commissioning Group (MCCG), has included this proposal for a Medway Neurological Hub in the specification for the current re-commisioning of Medway Adult Community Health Services.  Medway Neurological Network would be pleased to engage with any and all contractors that are in the process of bidding for this contract.
2.  Prescription Charges: MNN has been campaigning for free prescriptions for those of working age who have long-term conditions. There is a national campaign for this, and locally MNN has sent letters to our 3 Medway MPs. We have outlined the case and asked them for their support. Click HERE for an example of one of our letters.

3.  Passport for Leisure: Medway Council opporates a scheme which allowes discounted prices to all Medway Council leisure centres at specific times. However, it has been pointed out that people with fluctuating neurological conditions may not be able to attend at these times, and hence will not be able to claim a discount. We are campaiging for un-restricted access for those with fluctuating long-term condition. The issue has been raised with Medway Council and has been bought to the attention of our local MPs.  Thus far we have met with little success, but the campaign continues! 

4.  Bus Passes:  Medway Council opperates locally a national scheme to provide those eligible with a Disabled Bus Pass. However, the same rules apply with the use of the pass as a pass issued in respect of age. The main concern is that a bus pass issued to a Working Aged disabled person cannot be used before 09:30! We have drawn the Council's attention to the fact that London Transport does allow unrestricted use of their disabled bus pass and has repeatedly asked Medway Council to follow suit. Thus far we have not been successful, but the campaign continues! 

5.  Hospital Automatic Doors:  The exterior doors into the Brown Zone of Medway Maritime Hospital are currently manual, and this entrance is the one used by patients attending the Neurology Department.  Many patients have complained that they have had trouble entering through this door, as they may be using crutches, rollators or be in wheelchairs or on scooters.  They have had to suffer the indignity of having to wait for an ablebodied person to open the door for them; hardly independent living.  The Medway Foundation Trust has been asked to install automatic or push-button doors to the Brown Zone on a number of occasions, but reason/ excuses have been numerous.  No money/ different priorities top the list, but also the MFT says that it is having trouble with its existing automatic/ push-button doors and wants to get this sorted first and it has also cited security concerns in the event of a lock-down.  A minor victory is that the entrance button/ speaker intercom from the corridor into the Neurology Department has been lowered, such that it can be operated from a wheelchair or scooter.  This campain continues.

6.   Personal Independence Payments (PIPs): MNN is campaigning that criteria for this benefit be changed such that those with fluctuating (neurological) conditions and/ or mental health issues should qualify for PIP.  We are also campaigning that those diagnosed with a neurological condition that is progressive and/ or a condition for which there is no cure should not have to endure regular PIP re-assessments. Phil Bungay helped take this campaign to Downing Street on 8 March 2018, and Isabelle Miller has tweeted Phil delivering his PIP message, click HERE to see the video.

Wheelchair Service Campaign to Improve Service

Breaking News:  The Joint Wheelchair User group has issued a response statement to the Health Overview & Scrutiny Committee report, and this can be viewed in full HERE. Following a meeting of all stakeholders on 17 August 2018 the statement includes the following:

The position of the Joint Wheelchair User Group prior to this meeting was to lobby for the complete withdrawal of funding for the Wheelchair Service contract from Millbrook Healthcare. We are pleased to report after a mutually respectful, open and productive meeting that position has now changed. Our priority has always been to see an improvement in service delivery to users, not necessarily to see the withdrawal of funding to any particular contract. A range of measures were put forward by the CCGs and Millbrook that would, if fulfilled, go a long way towards seeing a significant improvement in the delivery of services.

The campaign had led to a review of the Kent & Medway Wheelchair Service (provided by Millbrook Healthcare) by the Medway Council Health Overview & Scrutiny Committee.  This review is now published in the public domain and can be viewed in full HERE.

The review finds evidence that the wheelchair service is unsatisfactory and action is urgently needed to improve the service.  However, the HOSC has decided against terminating the existing contract with Millbrook Healthcare, citing that this could only lead to a worse service over the next 12 months.  Instead it has decided to set-up a Service User Improvement Group.

The Joint Wheelchair User Group comprises: Kent Physical Disability Forum, Freedom for Wheels, the Centre for Independent Living, Kent (CiLK), and the Kent Wheelchair User Group, along with members of the Medway Physical Disability Partnership Board and led by Prof. Mike Oliver.

Medway Neurological Network fully supports this campaign.
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Web design & editing: Martin Nagler

Last Update: 15 September 2019, MJN
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