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Weldmar takes part in pioneering home adaptations campaign for MND patients

6th April 2021


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As part of it’s services, Weldmar Hospicecare provides a specialist service for people with Motor Neurone Disease (MND) and their families across West Dorset.

These patients are able to access regular multi-disciplinary MND clinics and to receive much needed support within their own homes from Weldmar’s specialist professionals.

As with many things during the Covid-19 pandemic, the clinics are being held virtually at present, but home visits are still being made by members of the team as necessary.

Jane Smith is a Specialist Occupational Therapist at Weldmar and will assess people with MND soon after their initial diagnosis. MND causes progressive muscle weakness which can cause a gradual deterioration in mobility and hand function; and cause difficulties with the ability to speak, swallow, cough, and breathe. Jane’s role is to provide advice, equipment and suggest adaptations to the home to help maintain the independence of people with MND for as long as possible.

Jane is currently involved with a pilot project called ‘Act to Adapt’ with the Motor Neurone Disease Association (MND Association). This looks at ways to improve the process by which local councils deliver home adaptations for people with MND. West Dorset is currently just one of three pilot areas in the country to be involved.

The Act to Adapt report, published by the MND Association in 2019, makes a number of recommendations as to how councils can begin to make the adaptations process faster and fairer. Jane has been taking part in virtual meetings with key members of the MND Association and local interested parties to explore how these recommendations could be realised in West Dorset.

On 2nd February this year, Jane had the opportunity to be one of the speakers at the Local Government Labour Conference and then more recently was invited to be a speaker at the Conservative Councillors Association Conference on 5th March. This provided a valuable opportunity to share both her experience of supporting people living with MND to access home adaptations and her involvement in the Act to Adapt campaign pilot in West Dorset.

“A person with MND will require their home to be adapted in a number of ways to meet their future needs” says Jane, “including having level access to the property and enough space within the home for wheelchair use, adapting a bathroom into a wet-room, and installing specialist equipment such as hoists, a specialist bed, specialist seating and a shower/commode chair. If the home can be adapted, then, following a referral to Social Services, an application for a Disabled Facilities Grant (DFG) will be made.”

The current statutory timeline sees councils having to give a decision on a grant within six months, and twelve months to provide the funding if approved. However, a third of people will die within in the first year of an MND diagnosis, and half will die within two years. One of Jane’s fellow speakers at the conference shared the story of a local council who turned up to start a home adaptation on the day the patient passed away.

“As you can see the statutory timescales themselves are working against those with MND” Jane explains. “So we are trying to explore ways in which local processes can be improved, working with local professionals and council members to identify opportunities for change so that we can remove the pinch points in the process.

The Act to Adapt campaign is also hoping to fast track people with an MND diagnosis to get automatic approval for a Disabled Facilities Grant, and to increase the current cap of £30,000 (England), which currently does not rise year on year to reflect inflation and increasing building costs.

ot and physiotherapyThere is also encouragement to provide patients with better information about adaptations earlier and to co-ordinate services more effectively. To this end, one of the other pilot areas (thanks to a legacy grant) was able to appoint a single key worker to oversee MND home adaptations. This key worker was then able to co-ordinate directly with the person with MND, their family, occupational therapists, the council, contractors, and surveyors in order to improve communication and information sharing.

Jane says, “It was a great opportunity and a real privilege to be able to speak at both conferences in order to support the aims of the Act to Adapt Campaign. The conferences were attended by cabinet members for housing and councillors from across the country, who were very supportive, and many were keen to help move forward with recommendations from the campaign, and to stay connected with the MND Association. If you are interested in joining the campaign locally do get in touch”

Find out more about Act To Adapt here

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